- Appointment with the pediatrician - 8 pounds 12 ounces and 22 inches long.
- Now feeding around 30 ml from a bottle and 40 ml through the NG tube.
- Had his first immunization shot (only cried a little bit).
- Daddy and I have replaced his NG tube once (he coughed it out his mouth) and the trach (Saturdays are "trach changing days").
- Many visitors have come to cuddle and meet the little man.
- Found out we're being referred to Dr. Song (a cornea surgeon) at Children's Hospital Los Angeles not UCLA Medical.
- Should know next week when we're heading down south.
- Does not hate "tummy time" as much as I expected.
- LOVES to be held.
- Several doctors appointments are scheduled for the next few weeks.
Saturday, February 28, 2009
One Month Old
Noah is one month old today! We have had a wonderful and busy week home. I will post more soon, but some of the highlights are:
Tuesday, February 24, 2009
One Word...
I have only one word to share and It's amazing how this word can mean so much to me.
This mere four letter word is where weary people desire after a troublesome day...
Hearts are devastated when this word is lost and mended when found...
Men and women go off to war and sacrifice their lives to defend this word...
...and this word is a place I have finally found.
Home.
I am finally home.
This mere four letter word is where weary people desire after a troublesome day...
Hearts are devastated when this word is lost and mended when found...
Men and women go off to war and sacrifice their lives to defend this word...
...and this word is a place I have finally found.
Home.
I am finally home.
Monday, February 23, 2009
Highs and Lows
This weekend was VERY busy and there were a series of highs and lows. Kc and I continued to stay in Room 1631 and the nights have gotten a bit better. We're able get a few hours of sleep in between feedings and diaper changes. Speaking of feedings, Noah was eating so well on Thursday that Dr. Fields took out his NG feeding tube. We were able to get a few pictures of him without anything covering his face (the first time since right after he was born).
As soon as the tube was out, however, Noah went on a bit of a hunger strike. He refused to drink anything from his bottle. We tried everything to get him interested — multiple different nipples attached to the bottle (thanks Nana for getting them), waiting longer between feedings, I even switched from breast milk to formula to see if he would like that better. Nothing worked. Unfortunately after 24 hours of very minimal eating, we put the NG tube back in. He is now eating around 30 ml from the bottle and the rest is pumped through the tube.
On a high note, we had several visitors who brought us yummy treats to eat. Noah got to be held by Chris and Lindsay (the future Mr. and Mrs. Overstreet) and Katie (the future Mrs. Torstensen). Our friends Dave and Mary are coming by tonight and Nana and Papa have been here lots.
Kc and I went to church on Sunday. It was our first time since Noah was born. Our church family has been so supportive over the past few weeks. They prayed for us and gave us the encouragement to keep going!
There is a strong possibility that we will be going home tomorrow morning. Yeah!!!!!! It will be a short stay, however, for we will be heading down to Children's Hospital Los Angeles to see a cornea surgeon and hopefully get some more information about the new drug. We'll know more tonight.
As soon as the tube was out, however, Noah went on a bit of a hunger strike. He refused to drink anything from his bottle. We tried everything to get him interested — multiple different nipples attached to the bottle (thanks Nana for getting them), waiting longer between feedings, I even switched from breast milk to formula to see if he would like that better. Nothing worked. Unfortunately after 24 hours of very minimal eating, we put the NG tube back in. He is now eating around 30 ml from the bottle and the rest is pumped through the tube.On a high note, we had several visitors who brought us yummy treats to eat. Noah got to be held by Chris and Lindsay (the future Mr. and Mrs. Overstreet) and Katie (the future Mrs. Torstensen). Our friends Dave and Mary are coming by tonight and Nana and Papa have been here lots.
Kc and I went to church on Sunday. It was our first time since Noah was born. Our church family has been so supportive over the past few weeks. They prayed for us and gave us the encouragement to keep going!
There is a strong possibility that we will be going home tomorrow morning. Yeah!!!!!! It will be a short stay, however, for we will be heading down to Children's Hospital Los Angeles to see a cornea surgeon and hopefully get some more information about the new drug. We'll know more tonight.
Friday, February 20, 2009
Not much sleep
Well...last night was an adventure! Let's start at the beginning.
At around 9:00 p.m. I decided to lay down in preparation for waking up every three hours to do diaper changes and get ready for feedings. There is a large vinyl chair that folds down to a "bed". It is definitely larger than a twin but I don't think it's quite a full. Kc was not tired at all, so he stayed up and read for a bit. About every 15 minutes there was some disturbance — alarms going off, nurses coming in to check said alarms, kiddos next door crying, nurses coming in to "take vitals", other nurses coming in to take blood samples, and pump machines making beeping noises. Noah was amazing and seemed to sleep through the whole thing. We, however, did not.
At midnight, after NO sleep, Noah's pediatrician came in to do rounds. He asked about how Noah's feeds have been. I told him that two days ago, because of the concern with how much Noah was spitting up, one of the hospitalist increased the time that his feeds are pumped through the NG tube. Instead of the typical thirty minutes, they increased his feeding time to ninety minutes. Because he is fed every three hours, he would feed for an hour and a half and then digest for only an hour and a half before feeding again. The feedings were so long that Noah was not feeling hungry and therefor stopped bottle feeding. I was unable to get him to take more than 10 ml the past two days and his OT, Sandy, couldn't do any better. Noah's pediatrician, Dr. Fields, immediately called a nurse in to the room and had her stop his pump feeding through the NG tube. He said that in order for Noah to go home, he needs to learn to eat, and in order for him to eat, he needs to be hungry. Dr. Fields then told me to bottle feed him every three hours. I am proud to announce that my little man has taken three bottles of 75 ml each over the past three feedings. He has not had any milk put on a pump to go down his NG tube. What do you know, a hungry boy will eat.
Kc left for work at 6:00 a.m. after a combined total of about one hour of sleep. He went in early because he needed to come back to Children's Hospital today at 10:00 a.m. for Noah's second trach change. Nana, Papa and Kc all got to practice putting in a new trach. Right before that, Noah had his first cast change. The nurse practitioner who changed his casts told me that "his legs are looking great".
Nana stopped by our condo to pick up the mail and feed Kitty. Waiting at the front door was a package addressed to Noah from Aunt Mary Lynn, Nicole, Marvin, Megan and Dakota, containing some Green Bay garb for next year's Super Bowl. Doesn't he look like a future Packer fan?
Hopefully tonight will be a bit more calm and we can get some much needed sleep between feedings. Either that, or we'll be so exhausted that we'll sleep through all the beepings and interruptions.
Thank you for the prayers! I am very hopeful and optimistic that we'll be going home soon.
At around 9:00 p.m. I decided to lay down in preparation for waking up every three hours to do diaper changes and get ready for feedings. There is a large vinyl chair that folds down to a "bed". It is definitely larger than a twin but I don't think it's quite a full. Kc was not tired at all, so he stayed up and read for a bit. About every 15 minutes there was some disturbance — alarms going off, nurses coming in to check said alarms, kiddos next door crying, nurses coming in to "take vitals", other nurses coming in to take blood samples, and pump machines making beeping noises. Noah was amazing and seemed to sleep through the whole thing. We, however, did not.
At midnight, after NO sleep, Noah's pediatrician came in to do rounds. He asked about how Noah's feeds have been. I told him that two days ago, because of the concern with how much Noah was spitting up, one of the hospitalist increased the time that his feeds are pumped through the NG tube. Instead of the typical thirty minutes, they increased his feeding time to ninety minutes. Because he is fed every three hours, he would feed for an hour and a half and then digest for only an hour and a half before feeding again. The feedings were so long that Noah was not feeling hungry and therefor stopped bottle feeding. I was unable to get him to take more than 10 ml the past two days and his OT, Sandy, couldn't do any better. Noah's pediatrician, Dr. Fields, immediately called a nurse in to the room and had her stop his pump feeding through the NG tube. He said that in order for Noah to go home, he needs to learn to eat, and in order for him to eat, he needs to be hungry. Dr. Fields then told me to bottle feed him every three hours. I am proud to announce that my little man has taken three bottles of 75 ml each over the past three feedings. He has not had any milk put on a pump to go down his NG tube. What do you know, a hungry boy will eat.
Kc left for work at 6:00 a.m. after a combined total of about one hour of sleep. He went in early because he needed to come back to Children's Hospital today at 10:00 a.m. for Noah's second trach change. Nana, Papa and Kc all got to practice putting in a new trach. Right before that, Noah had his first cast change. The nurse practitioner who changed his casts told me that "his legs are looking great".Nana stopped by our condo to pick up the mail and feed Kitty. Waiting at the front door was a package addressed to Noah from Aunt Mary Lynn, Nicole, Marvin, Megan and Dakota, containing some Green Bay garb for next year's Super Bowl. Doesn't he look like a future Packer fan?
Hopefully tonight will be a bit more calm and we can get some much needed sleep between feedings. Either that, or we'll be so exhausted that we'll sleep through all the beepings and interruptions.Thank you for the prayers! I am very hopeful and optimistic that we'll be going home soon.
Thursday, February 19, 2009
We moved again, again, again
Last night, after Phil and Katy Mc came by for a visit and brought us dinner, Noah was moved out of the NICU. We are now "on the floor" which means we are in a normal hospital room. The nurse who moved us said, "we are one step closer to the front door". There are kids from age two through sixteen surrounding Noah. Kc and I will now be "rooming in" with Noah starting tonight. Please pray that we are able to sleep with all the beeps, interruptions from nurses and "cries" from Noah. Let the joy begin!!!
We have a busy day planned. Noah will have his casts replaced today after lunch and then I will give him a bath (something he LOVES). Nana is planning a visit in the afternoon as well as his eye doctor, Dr. Kelly. Add to that, several diaper changes, feedings every three hours, trach suctioning every few hours, nurses assessing Noah, as well as the mandatory cuddle time, we have a typical day at Children's Hospital.
I'll post some pictures as soon as Kc comes "home" after work. I thought our condo was small, but spending the next several days and nights in the hospital room will make home seem like a mansion. It's just like being at a noisy hotel without the room service.
We have a busy day planned. Noah will have his casts replaced today after lunch and then I will give him a bath (something he LOVES). Nana is planning a visit in the afternoon as well as his eye doctor, Dr. Kelly. Add to that, several diaper changes, feedings every three hours, trach suctioning every few hours, nurses assessing Noah, as well as the mandatory cuddle time, we have a typical day at Children's Hospital.
I'll post some pictures as soon as Kc comes "home" after work. I thought our condo was small, but spending the next several days and nights in the hospital room will make home seem like a mansion. It's just like being at a noisy hotel without the room service.
Tuesday, February 17, 2009
Next Week!!!
Yesterday was a bit of a discouraging day and we didn't get home till very late. I actually had to give myself permission NOT to blog. I am sorry to all of you who logged on this morning and did not have anything to read.
These past two days, Noah has had several visitors. My good friend Debbie came Monday morning and today another friend, Lisa, came in the morning and Joanie came in the afternoon. My little man is being spoiled by so many people. He is loves cuddling and sleeping in the arms of lovely ladies.
Dr. Lin, a cornea specialist, came and saw Noah yesterday. He said that Noah's left eye is a "very difficult case". Unfortunately if the capillaries continue to encroach on his cornea, he will loose his sight. There is a brand new clinical trial that Noah may qualify for. It is for a drug that is currently given to diabetes patients but has not been tested on infants. We'll get more information on it later this week.
Noah had several ups and downs with his eating these past two days. He seems to eat fairly well for me but has difficulty at night when the nurses feed him. Yesterday, the doctor was still worried about how much Noah was spitting up and was talking about putting in a GT tube (a feeding tube that goes from the abdomen directly into the stomach). Today, however, I had a long "chat" with the doctor. I explained to him that Noah is eating VERY well with me and only spits up when he burps. I convinced the doctor to increase the amount of food Noah eats from 50 ml to 60 ml (that's 2 ounces). If Noah can gradually make it up to 70 ml in a feeding and keep the wet burps to a minimum, he can go home some time next week!!!! We are SO excited!!! We can't wait to finally bring our little man home.
These past two days, Noah has had several visitors. My good friend Debbie came Monday morning and today another friend, Lisa, came in the morning and Joanie came in the afternoon. My little man is being spoiled by so many people. He is loves cuddling and sleeping in the arms of lovely ladies.
Dr. Lin, a cornea specialist, came and saw Noah yesterday. He said that Noah's left eye is a "very difficult case". Unfortunately if the capillaries continue to encroach on his cornea, he will loose his sight. There is a brand new clinical trial that Noah may qualify for. It is for a drug that is currently given to diabetes patients but has not been tested on infants. We'll get more information on it later this week.
Noah had several ups and downs with his eating these past two days. He seems to eat fairly well for me but has difficulty at night when the nurses feed him. Yesterday, the doctor was still worried about how much Noah was spitting up and was talking about putting in a GT tube (a feeding tube that goes from the abdomen directly into the stomach). Today, however, I had a long "chat" with the doctor. I explained to him that Noah is eating VERY well with me and only spits up when he burps. I convinced the doctor to increase the amount of food Noah eats from 50 ml to 60 ml (that's 2 ounces). If Noah can gradually make it up to 70 ml in a feeding and keep the wet burps to a minimum, he can go home some time next week!!!! We are SO excited!!! We can't wait to finally bring our little man home.
Sunday, February 15, 2009
I have casts
The past two days have been good in the NICU. Having a private room is quite nice, there aren't as many beeps from other baby's monitors, we have our own private bathroom as well as a TV, and Kc can bring his computer and we can update the blog from the hospital.
Yesterday morning, Dr. Gerardi came in and put Noah's casts on. He used a special dressing that was developed by NFL trainers. They look like fiberglass casts, but they hardened in less than two minutes and are fairly flexible. Noah doesn't seem to mind the casts which is a good thing. He will have his casts changed weekly for aproxiamately a month before he has a minor surgery on his achilles tendon. He will then be casted for about two months before he graduates to braces.
Kc, Nana, Papa and I all took an Infant CPR class that focused on trach babies. We practiced placing a "bag" on a trach and giving two breaths before giving 30 chest compressions. We also learned the four symptoms of a choking child — crying without any noise, excessive coughing or coughing without any sound, high pitched voice or gurgling sounds, and a bluish tint in the face. Because of Noah's trach he shows three out of four symptoms at all times, so I suppose, if he is choking we will just be looking for a blue baby. I guess dressing up as a Smurf for Halloween will not be an option!
Grandma Jackson and Uncle Scott came by for another visit before heading back up to Rocklin. Noah truly loves being held and rocked!
His feedings are going well. He is now bottle fed every other feeding and has increased his milk intake to 45 ml. He will continue to increase 1 ml every feeding until 50 ml. When Noah is able to drink 70 ml the doctors will decrease the fluids given to him through his PICC line (a deep IV line that goes through a vein in his arm towards his heart). Eventually the PICC line will be taken out and he can go home. Noah is still spitting up during every feeding, but I am confident that he is just a "typical boy" who loves to spit.
Yesterday morning, Dr. Gerardi came in and put Noah's casts on. He used a special dressing that was developed by NFL trainers. They look like fiberglass casts, but they hardened in less than two minutes and are fairly flexible. Noah doesn't seem to mind the casts which is a good thing. He will have his casts changed weekly for aproxiamately a month before he has a minor surgery on his achilles tendon. He will then be casted for about two months before he graduates to braces.
Kc, Nana, Papa and I all took an Infant CPR class that focused on trach babies. We practiced placing a "bag" on a trach and giving two breaths before giving 30 chest compressions. We also learned the four symptoms of a choking child — crying without any noise, excessive coughing or coughing without any sound, high pitched voice or gurgling sounds, and a bluish tint in the face. Because of Noah's trach he shows three out of four symptoms at all times, so I suppose, if he is choking we will just be looking for a blue baby. I guess dressing up as a Smurf for Halloween will not be an option!Grandma Jackson and Uncle Scott came by for another visit before heading back up to Rocklin. Noah truly loves being held and rocked!
His feedings are going well. He is now bottle fed every other feeding and has increased his milk intake to 45 ml. He will continue to increase 1 ml every feeding until 50 ml. When Noah is able to drink 70 ml the doctors will decrease the fluids given to him through his PICC line (a deep IV line that goes through a vein in his arm towards his heart). Eventually the PICC line will be taken out and he can go home. Noah is still spitting up during every feeding, but I am confident that he is just a "typical boy" who loves to spit.
Saturday, February 14, 2009
Friday, February 13, 2009
We moved again, again
Today was a busy day for the Jacksons. Bright and early in the morning, I reported to the NICU for my first trach change. Dave, Noah's Respiration Therapist, walked me through the process and stood by as I quickly pulled out the old trach and slid the new one in. It was not as scary as I had anticipated, but we'll see how confident I am when I am changing it by myself. Next week, I will teach Kc how to change the trach (with Dave standing by). It's just like changing a tire —watch one, do one, teach one.
After Dave left, Sandy came to work with Noah on bottle feeding. He drank another 27 ml from the bottle. He is now going to be bottle fed twice a shift in the hopes that "practice makes perfect". Noah's Upper GI test results came back normal. He has acid reflux that is being treated with medication, but there are no problems with his esophagus or stomach. Thank goodness!
Right after lunch, we found out that Noah was being moved into a private room. He is now in Endeavour 12 which has two comfy chairs and its own bathroom. We are even permitted to spend the night with the little man. He is now even closer to going home. Nana, Grandma Jackson and Uncle Scott all came to check out Noah's new digs.
After Dave left, Sandy came to work with Noah on bottle feeding. He drank another 27 ml from the bottle. He is now going to be bottle fed twice a shift in the hopes that "practice makes perfect". Noah's Upper GI test results came back normal. He has acid reflux that is being treated with medication, but there are no problems with his esophagus or stomach. Thank goodness!
Right after lunch, we found out that Noah was being moved into a private room. He is now in Endeavour 12 which has two comfy chairs and its own bathroom. We are even permitted to spend the night with the little man. He is now even closer to going home. Nana, Grandma Jackson and Uncle Scott all came to check out Noah's new digs.
Thursday, February 12, 2009
We moved again
Today was a pretty good day for Noah. He had his Upper GI test in the morning and we should have the results of that tomorrow. I was able to feed him from a bottle at his 3:00 p.m. feeding. Nana was there to cheer him on and he drank 27 ml but managed to spit up twice. If he cannot learn to bottle feed, the doctors told me I will need to learn how to put in an NG tube (the tube that goes from his nose to his stomach). There is a reason that I became a teacher and not a nurse. I told Noah that I did not want to be putting any tubes down his nose and that suctioning out his trach is hard enough as it is. We had a big discussion about keeping his food down, and Noah promised me he would think about it.
Late in the afternoon, Noah moved to another room. 
He was transferred from Room 1 to Family Care West. It is a larger room with more babies. We were told by the nurses that he is now "one step closer to going home".
It is quite an ordeal to move NICU babies around. Noah has six wires/tubes connected from his little body to different monitors in the room. When he moves, all of those wires/tubes need to be disconnected from the old monitors and reconnected to new monitors in the new room. It's a good thing he's such a little guy in a big crib, notice the "mess" he has around him. 
We received a "care package" in the mail yesterday from our good friends Robyn and Ira. They included some treats for Kc and I as well as the cutest "Team Noah" shirts for the three of us. Noah will have to grow a bit to fit into his, but I was able to smuggle it into the NICU for a picture. Thanks so much you guys!
Late in the afternoon, Noah moved to another room. 
He was transferred from Room 1 to Family Care West. It is a larger room with more babies. We were told by the nurses that he is now "one step closer to going home".
It is quite an ordeal to move NICU babies around. Noah has six wires/tubes connected from his little body to different monitors in the room. When he moves, all of those wires/tubes need to be disconnected from the old monitors and reconnected to new monitors in the new room. It's a good thing he's such a little guy in a big crib, notice the "mess" he has around him. 
We received a "care package" in the mail yesterday from our good friends Robyn and Ira. They included some treats for Kc and I as well as the cutest "Team Noah" shirts for the three of us. Noah will have to grow a bit to fit into his, but I was able to smuggle it into the NICU for a picture. Thanks so much you guys!
Happy Birthday Papa...
Today is my Papa's birthday. We have spent a lot of time rocking and cuddling together. Happy Birthday!!!
Wednesday, February 11, 2009
Two Weeks Old
Noah is two weeks old today. As I think back over the last fourteen days, I am amazed how much he has changed. As a way to celebrate two weeks of life, Noah drank from a bottle twice today. He drank 27 ml with Sandy at his noon feeding and then 30 ml with me at 6:00 p.m. It was the first time I got to feed my little man. It is a slow process, with many breaks in between, but he continues to work hard and make progress.
We got the results of his MRI back today. We are very thankful that his brain looks normal, and as we expected, his right eye is underdeveloped and will never be functioning. Tomorrow, Noah will have yet another test — an upper GI study. The doctors are concerned with the amount and frequency that Noah is spitting up (more like throwing up). They will be injecting him with a dye through his NG tube to get an idea what is going on in his tummy.
Noah and I had quite a bit of cuddle time today — only the best time of the day.
Noah and I had an opportunity to read some more books today. I pulled out a book by Mo Willems, one of my favorite children's authors. The students in my class love the Pigeon, Duckling, Elephant and Piggie (main characters in Mo's books) and I am thrilled to introduce them all to Noah. As you can tell, he loved them too.
We got the results of his MRI back today. We are very thankful that his brain looks normal, and as we expected, his right eye is underdeveloped and will never be functioning. Tomorrow, Noah will have yet another test — an upper GI study. The doctors are concerned with the amount and frequency that Noah is spitting up (more like throwing up). They will be injecting him with a dye through his NG tube to get an idea what is going on in his tummy.Noah and I had quite a bit of cuddle time today — only the best time of the day.
Noah and I had an opportunity to read some more books today. I pulled out a book by Mo Willems, one of my favorite children's authors. The students in my class love the Pigeon, Duckling, Elephant and Piggie (main characters in Mo's books) and I am thrilled to introduce them all to Noah. As you can tell, he loved them too.
Tuesday, February 10, 2009
Daddy's Back at Work
Today started out bright and early. Noah had an MRI scheduled at 8:15 so Nana and I headed to Valley Children's to be with the little man. He needed to be sedated to ensure that he would be perfectly still for the MRI, so while Noah was being taken care of by that anesthesiologist, we had a chance to chat with a friend, Kirsten, who is an ER nurse at Valley Children's. After recovering from a "light sleep", Noah had a visit from his OT, Sandy, and practiced feeding from a bottle again. He is getting much better and only gagged himself twice. He drank 23 ml from the bottle and finished the last 17 ml through his NG tube.
After much cuddling and sleeping, Noah had a visit from Dr. Kelly, the ophthalmologist. Her second examination of his left eye was encouraging. Noah's retina looks good but his cornea is swollen and becoming cloudy. She has increased the eye drops that he is given in hopes of preventing any more damage to the cornea.
We said a sad farewell to our friend Mia today. She has left Valley Children's Hospital and transferred to a hospice home for young children. We have all been touched my Mia and her parents, Sarah and Bryce. They are walking down a crooked path full of uncertainty but are trusting in the Lord to comfort them along the way. We thank them for shepherding us through the trials of tracheotomies and will pray for them in this new chapter of their lives.
Kc returned to work on Monday and has been missing his little man. At one minute passed five, he jumps in his car and speeds towards the hospital to join us. He arrives just in time to change a diaper, empty the ostomy bag, and hold his son while he takes his six o'clock feeding. Unfortunately we have to leave the NICU at 6:30 p.m. because they have a shift change, but Kc is able to spend some quality time with Noah every night.
After much cuddling and sleeping, Noah had a visit from Dr. Kelly, the ophthalmologist. Her second examination of his left eye was encouraging. Noah's retina looks good but his cornea is swollen and becoming cloudy. She has increased the eye drops that he is given in hopes of preventing any more damage to the cornea.
We said a sad farewell to our friend Mia today. She has left Valley Children's Hospital and transferred to a hospice home for young children. We have all been touched my Mia and her parents, Sarah and Bryce. They are walking down a crooked path full of uncertainty but are trusting in the Lord to comfort them along the way. We thank them for shepherding us through the trials of tracheotomies and will pray for them in this new chapter of their lives.Kc returned to work on Monday and has been missing his little man. At one minute passed five, he jumps in his car and speeds towards the hospital to join us. He arrives just in time to change a diaper, empty the ostomy bag, and hold his son while he takes his six o'clock feeding. Unfortunately we have to leave the NICU at 6:30 p.m. because they have a shift change, but Kc is able to spend some quality time with Noah every night.
Monday, February 9, 2009
Fraser Syndrome
Yesterday was a perfect example of two steps forward, one step backward. The three of us had been having a beautiful couple of days in the NICU. We've had a string of great nurses, we are discovering that Noah is a "spitter" (he just spits up a lot), and have spent plenty of time holding and cuddling.
Dr. Curry, the geneticist, came to look at Noah in the afternoon. She did a thorough evaluation and told us that she is positive Noah has a VERY rare syndrome called Frazer Syndrome. Apparently, both Kc and I are carriers of a recessive gene. When we have children, they have a one in four chance of getting both recessive genes passed on and developing Frazer Syndrome. We have had two sons and both of them had the syndrome. Dr. Curry was certain that Ryan was miss diagnosed with Potters Sequence, and that he had Frazer Syndrome. This is an incredibly rare syndrome. Dr. Curry does not think she has seen a case before in her 34 years as a geneticist. Some of the research I have done on the internet states that there have been less than 200 documented cased in the past twenty years.
Most children with Frazer Syndrome do not live past one year of age. Noah seems to be less severe than most cases. Of his many defects, most of them can be fixed with surgery. He will have several surgeries in the next two years to repair his imperforated anus, fix his club feet, enlarge his trachea, separate the small webbing between his third and fourth fingers, and fix the strictures in his urethra. What we are uncertain, and most scared about, are his sight, hearing and cognitive development. Most children with Fraser Syndrome are blind. Noah does seem to respond to light so we think he has some vision, but it is probably very limited. Dr. Curry has ordered a MRI of his right eye, but thinks that what is under the skin is not developed enough to be useful. We will know more at the end of this week.
Most children with Fraser Syndrome have some hearing loss and cognitive difficulties. Noah does respond to loud sounds as well as Mamma's soft voice. We think he will have some hearing, but are not sure how much. As far as his cognitive abilities, once again, we are hopeful because Noah seems to act like a typical two week old. He is happy when he is dry, fed and nobody is bothering him. He gets fussy, and downright irate, when people are poking and prodding. He has good muscle tone and is working on holding his head up.
It is truly amazing that I, who carry a recessive gene, met and fell in love with another person who carries the very same recessive gene. This has huge implications for whether or not we have any other children, but I think we are getting ahead of ourselves. One step at a time. It is nice to finally know what we are dealing with and be able to arm ourselves with research (what little there is). We continue to thank you for your prayers and support! You are all amazing!!!
Dr. Curry, the geneticist, came to look at Noah in the afternoon. She did a thorough evaluation and told us that she is positive Noah has a VERY rare syndrome called Frazer Syndrome. Apparently, both Kc and I are carriers of a recessive gene. When we have children, they have a one in four chance of getting both recessive genes passed on and developing Frazer Syndrome. We have had two sons and both of them had the syndrome. Dr. Curry was certain that Ryan was miss diagnosed with Potters Sequence, and that he had Frazer Syndrome. This is an incredibly rare syndrome. Dr. Curry does not think she has seen a case before in her 34 years as a geneticist. Some of the research I have done on the internet states that there have been less than 200 documented cased in the past twenty years.
Most children with Frazer Syndrome do not live past one year of age. Noah seems to be less severe than most cases. Of his many defects, most of them can be fixed with surgery. He will have several surgeries in the next two years to repair his imperforated anus, fix his club feet, enlarge his trachea, separate the small webbing between his third and fourth fingers, and fix the strictures in his urethra. What we are uncertain, and most scared about, are his sight, hearing and cognitive development. Most children with Fraser Syndrome are blind. Noah does seem to respond to light so we think he has some vision, but it is probably very limited. Dr. Curry has ordered a MRI of his right eye, but thinks that what is under the skin is not developed enough to be useful. We will know more at the end of this week.
Most children with Fraser Syndrome have some hearing loss and cognitive difficulties. Noah does respond to loud sounds as well as Mamma's soft voice. We think he will have some hearing, but are not sure how much. As far as his cognitive abilities, once again, we are hopeful because Noah seems to act like a typical two week old. He is happy when he is dry, fed and nobody is bothering him. He gets fussy, and downright irate, when people are poking and prodding. He has good muscle tone and is working on holding his head up.
It is truly amazing that I, who carry a recessive gene, met and fell in love with another person who carries the very same recessive gene. This has huge implications for whether or not we have any other children, but I think we are getting ahead of ourselves. One step at a time. It is nice to finally know what we are dealing with and be able to arm ourselves with research (what little there is). We continue to thank you for your prayers and support! You are all amazing!!!
Saturday, February 7, 2009
NICU Cribs...
Today was a relatively quiet and uneventful day in the NICU except for the occasional heel prick for a blood sugar test or the suctioning to clear my trach. So, since I didn't need to make any scheduled trips down to surgery, I thought this would be the perfect time to give you a tour of my new Crib. Once my real estate agent showed me the location two days ago and I instantly fell in love.
The first stop on our tour is the upper West Wing. My Mommy and Daddy come up here a few times a day to gather gear and prepare for my trach suctioning. I don't spend too much time up here alone when the nurses are around because it seems they frown on the idea of me performing my own trach suctioning. I tried to argue the subject, but apparently it's written in the Room 1 association fee contract.
Second stop is the basement. Most of the other cribs I had my eyes on had basements, but this one was especially large. The nurses and I are able to store our equipment, personal items and fish (sterile saline drops). I apologize for the mess.
Adjacent to the basement, Nurse Lourdes installed a new jacuzzi. Today was my first dip in the water since my birth date. I can't say I enjoyed it, but Mommy mentioned how good I smelled after I spent time being scrubbed. I suppose this is why people call it a chick magnet.
Just south of my crib I constructed a wonderful lounge area where Mommy, Daddy and I spend quality time while we eat, rock and take wonderful naps together. From the lounge and my crib, the view out the window overlooks the valley and the snow capped mountains. It's absolutely amazing.
Thank you for stopping by to check out my new crib in the NICU.
Peace, Noah out!
The first stop on our tour is the upper West Wing. My Mommy and Daddy come up here a few times a day to gather gear and prepare for my trach suctioning. I don't spend too much time up here alone when the nurses are around because it seems they frown on the idea of me performing my own trach suctioning. I tried to argue the subject, but apparently it's written in the Room 1 association fee contract.
Second stop is the basement. Most of the other cribs I had my eyes on had basements, but this one was especially large. The nurses and I are able to store our equipment, personal items and fish (sterile saline drops). I apologize for the mess.
Adjacent to the basement, Nurse Lourdes installed a new jacuzzi. Today was my first dip in the water since my birth date. I can't say I enjoyed it, but Mommy mentioned how good I smelled after I spent time being scrubbed. I suppose this is why people call it a chick magnet.
Just south of my crib I constructed a wonderful lounge area where Mommy, Daddy and I spend quality time while we eat, rock and take wonderful naps together. From the lounge and my crib, the view out the window overlooks the valley and the snow capped mountains. It's absolutely amazing.
Thank you for stopping by to check out my new crib in the NICU.Peace, Noah out!
Friday, February 6, 2009
No Tests Today
It was another glorious day in the NICU. Noah did not have any tests today. Dr. Mead came in and spent about an hour talking to Kc and I about Noah's progress. His spinal ultrasound came back normal. The results from his voiding cystogram (pee test) came back fairly positive. They are keeping an eye on his acid reflux, but are hopeful that by reducing the amount of milk he takes in a single feeding will help. Dr. Curry, the geneticist, will be by on Monday to evaluate Noah and discuss the results of the detailed chromosomal test. She will also determine if there is a possibility he has a right eye. If so, a CT of the head will be ordered.
Noah had his first visit from his Occupational Therapist, Sandy. She began working with him on bottle feeding. Because Noah has had so many tubes in his mouth that go down his throat and gag him, he was a bit reluctant to have another woman shove something big in his pie hole. Once he figured out how hungry he was and that the bottle gave him yummy goodness, he was able to drink about half of his milk. He is learning the trifecta of sucking, breathing, and swallowing in it's propper order. When you try to do them all at once, bad things happen. Just ask Noah.
Kc and I did more training with Dave today. We practiced replacing a trach tube (something that will happen at least once a week) and changing trach ties (the straps that wrap around his neck) on a ratty, plastic doll who lives in a tackle box. Once Dr. Dunham replaces Noah's trach for the first time on Monday, we will begin to practice on the real thing. How scary!!!
There are no pictures today because we spent the majority of the day holding and cuddling - something we are getting VERY good at. We promise to post several tomorrow.
Noah had his first visit from his Occupational Therapist, Sandy. She began working with him on bottle feeding. Because Noah has had so many tubes in his mouth that go down his throat and gag him, he was a bit reluctant to have another woman shove something big in his pie hole. Once he figured out how hungry he was and that the bottle gave him yummy goodness, he was able to drink about half of his milk. He is learning the trifecta of sucking, breathing, and swallowing in it's propper order. When you try to do them all at once, bad things happen. Just ask Noah.
Kc and I did more training with Dave today. We practiced replacing a trach tube (something that will happen at least once a week) and changing trach ties (the straps that wrap around his neck) on a ratty, plastic doll who lives in a tackle box. Once Dr. Dunham replaces Noah's trach for the first time on Monday, we will begin to practice on the real thing. How scary!!!
There are no pictures today because we spent the majority of the day holding and cuddling - something we are getting VERY good at. We promise to post several tomorrow.
Thursday, February 5, 2009
A Beautiful Day
Today was a great day in the NICU! Noah did not have ANY tests done and although we did not receive any results from previous tests (we kept missing the doctors) we had several visitors and got to hold Noah most of the day. He currently weighs 8 pounds 14 ounces which is 10 ounces more than when he was born. He graduated from his warming bed into a big boy crib and is now able to wear clothes. We put Noah in a cute gown that his Auntie Nessa and Uncle Drew gave him for Christmas. Our little man is growing up!
Soon after Kc and I got in this morning, our Case Manager came in to talk to us about what life will be like with Noah at home. We will have suction equipment for his trach that must be with him at all times as well as a monitor that keeps track of his heart rate and breathing rate. I will have a large duffel bag to store his "travel" equiptment along with a diaper bag to take with me whenever we leave the house. Short trips to the market will be a thing of the past.
Noah's colostomy doctor, Dr. Hodge, came by early in the morning and told the nurses that "Noah needs to eat". Once they got approval from his primary care physicain, we were able to feed Noah 15 ml of milk through his NG tube every three hours. If he can get his breathing rate under control, Noah will be able to feed from a bottle. We're hopeful that will happen in the next few days.
After lunch, Noah had his first visitor. Joanie, a very close family friend, came to say "Hi". She brought in some books to read, but unfortunately Noah slept through her whole visit (I think it was his first food coma) and didn't get to hear any stories. After Kc and I had lunch in the hospital cafeteria (thanks to a generous gift card from our Church Staff), we returned to the NICU and Kc read a few books to Noah. That put him right back to sleep. Nana and Papa came to visit in the early afternoon. We took turns cuddling and rocking Noah, something he LOVES!!!!
Kc and I changed several diapers, emptied out the ostomy bag a few times, suctioned twice and watched the nurses replace his "split 2 x 2" (the gauze that is between his trach and neck). All in all, it was the best day we have had in the past week.
Soon after Kc and I got in this morning, our Case Manager came in to talk to us about what life will be like with Noah at home. We will have suction equipment for his trach that must be with him at all times as well as a monitor that keeps track of his heart rate and breathing rate. I will have a large duffel bag to store his "travel" equiptment along with a diaper bag to take with me whenever we leave the house. Short trips to the market will be a thing of the past.
Noah's colostomy doctor, Dr. Hodge, came by early in the morning and told the nurses that "Noah needs to eat". Once they got approval from his primary care physicain, we were able to feed Noah 15 ml of milk through his NG tube every three hours. If he can get his breathing rate under control, Noah will be able to feed from a bottle. We're hopeful that will happen in the next few days.
After lunch, Noah had his first visitor. Joanie, a very close family friend, came to say "Hi". She brought in some books to read, but unfortunately Noah slept through her whole visit (I think it was his first food coma) and didn't get to hear any stories. After Kc and I had lunch in the hospital cafeteria (thanks to a generous gift card from our Church Staff), we returned to the NICU and Kc read a few books to Noah. That put him right back to sleep. Nana and Papa came to visit in the early afternoon. We took turns cuddling and rocking Noah, something he LOVES!!!!
Kc and I changed several diapers, emptied out the ostomy bag a few times, suctioned twice and watched the nurses replace his "split 2 x 2" (the gauze that is between his trach and neck). All in all, it was the best day we have had in the past week.
Wednesday, February 4, 2009
One Week and Counting
It is hard to believe that one week ago, Noah was born. This week has perhaps been the longest week of our lives. The ups and downs are becoming less jarring as we take two steps forward and one step back.
Last night, after his midnight feeding, Noah had some acid reflux and aspirated a bit of his milk into his lungs. After a chest x-ray, the doctor was concerned that his lungs did not look as developed as they had first thought. He has been put on oxygen (the green tube covering his "nose") with the possibility that it will be pressurized later on.
After pulling out his OG tube (the tube that leads down his throat to his stomach) for the fifth time, the nurses decided he just didn't like it gagging him constantly (how intuitive of them). They changed it to a NG tube (going from his nose down his throat). He seems to tolerate that much better. To help with his acid reflux, Noah is feeding much slower (only 3 ml every hour) and is given some meds. Unfortunately, this means he will not be bottle feeding any time soon. Kc and I were hoping that we could start feeding him in the next few days, but that dream will have to wait.
Both Kc and I suctioned Noah again today. This suctioning involves taking serile gloves, putting them on in such an exact way that they remain sterile, connecting a long, sterile tube to a pump and then putting it down his trach. You must slowly, but not too slowly, twirl the tube as you pull it out of his trach, hopefully taking lots of goo along with it. Because Noah cannot breathe with the tube down his trach, he does not like being suctioned. It typically takes one of us to hold him still while the other suctions. He is suctioned about every four hours, depending on how "junky" he sounds. We are learning to listen to him breathe and determine when suctioning is needed.
Tomorrow, we should have some results from the voiding cystogram (pee test) and spinal ultrasound that were done today. Once again, we cannot thank you all enough for your love, prayers and support. We feel as though we have been out of touch for so long. Our days are spent morning to night in the NICU. This blog allows us to keep everyone in the loop without multiple phone calls. What started out as a way to share thoughts and pictures with out of town family members has grown into a phenomenon known as "Team Noah". Our little man has touched our lives and reinforced our faith. We are humbled to know that his story has touched so many of you. THANK YOU!!!!!
Last night, after his midnight feeding, Noah had some acid reflux and aspirated a bit of his milk into his lungs. After a chest x-ray, the doctor was concerned that his lungs did not look as developed as they had first thought. He has been put on oxygen (the green tube covering his "nose") with the possibility that it will be pressurized later on.
After pulling out his OG tube (the tube that leads down his throat to his stomach) for the fifth time, the nurses decided he just didn't like it gagging him constantly (how intuitive of them). They changed it to a NG tube (going from his nose down his throat). He seems to tolerate that much better. To help with his acid reflux, Noah is feeding much slower (only 3 ml every hour) and is given some meds. Unfortunately, this means he will not be bottle feeding any time soon. Kc and I were hoping that we could start feeding him in the next few days, but that dream will have to wait.Both Kc and I suctioned Noah again today. This suctioning involves taking serile gloves, putting them on in such an exact way that they remain sterile, connecting a long, sterile tube to a pump and then putting it down his trach. You must slowly, but not too slowly, twirl the tube as you pull it out of his trach, hopefully taking lots of goo along with it. Because Noah cannot breathe with the tube down his trach, he does not like being suctioned. It typically takes one of us to hold him still while the other suctions. He is suctioned about every four hours, depending on how "junky" he sounds. We are learning to listen to him breathe and determine when suctioning is needed.
Tomorrow, we should have some results from the voiding cystogram (pee test) and spinal ultrasound that were done today. Once again, we cannot thank you all enough for your love, prayers and support. We feel as though we have been out of touch for so long. Our days are spent morning to night in the NICU. This blog allows us to keep everyone in the loop without multiple phone calls. What started out as a way to share thoughts and pictures with out of town family members has grown into a phenomenon known as "Team Noah". Our little man has touched our lives and reinforced our faith. We are humbled to know that his story has touched so many of you. THANK YOU!!!!!
Moving Day...
Today I woke up one week old. One whole week! That's one hand and two fingers. Once I run out of fingers and toes I may need to start using the attached wires to keep track of how old I am. I wonder what my Mommy and Daddy use.
I saw Mommy and Daddy coming in to see me, but before they were able to scrub their hands, Nurse Liz said I was moving today. I wasn't sure about how I felt about moving. Moving means a bus. A bus means surgery. Surgery means a visit from that anesthesiologist. And we all know how I feel about that. However, this time was different. The nurses began to unhook the cords and tubes from the wall behind me, and that never happens. All of the monitors, bags and medical gear were loaded in the shelf below me. The wheels of my bed were unlocked and I began to move, slowly at first. As we cleared Room 5's doorway and hit the NICU straightaway we were breaking the 2 mph mark. My warming bed converted into an all terrain vehicle! Nurse Liz was sitting in her rocking chair, so I gave her a wave goodbye, along with my fellow NICU roommates in room 5.
The trip in my new ATV ended at the door of Room 1. I so was nervous to meet my new roommates, but once we entered Mommy told me she remembered meeting Mia here. Mommy and Daddy met Mia and her mommy the day before I received my tracheotomy to talk with a someone who experienced what we're going through. Once we entered, I saw Mia and she was incredibly nice so I felt right at home in my new room. Once moving day was over and all my gear was hooked up, to my satisfaction, it was Mommy time. There is no place or time like Mommy time. I napped in those perfect arms for almost an hour. I'm hooked.
Later that day, I moved yet again. This time my ATV drove me up to a cold room with a long table which had a giant metal arm attached to the ceiling. As soon as we entered and parked, my nurse moved me onto the table. She grabbed a tiny tube and slipped it into a place where no man wants a tube. I was not happy with that. It entered my bladder and made me pee. It was so embarrassing. Then, to make matters worse, liquid rushed into my bladder and then they started to take x-rays of what happened. It comes out! That's what happens! It comes out! I'm only a week old and I know what happens. As soon as that debacle was over, I drove back to Room 1 and took a long well deserved nap.
I saw Mommy and Daddy coming in to see me, but before they were able to scrub their hands, Nurse Liz said I was moving today. I wasn't sure about how I felt about moving. Moving means a bus. A bus means surgery. Surgery means a visit from that anesthesiologist. And we all know how I feel about that. However, this time was different. The nurses began to unhook the cords and tubes from the wall behind me, and that never happens. All of the monitors, bags and medical gear were loaded in the shelf below me. The wheels of my bed were unlocked and I began to move, slowly at first. As we cleared Room 5's doorway and hit the NICU straightaway we were breaking the 2 mph mark. My warming bed converted into an all terrain vehicle! Nurse Liz was sitting in her rocking chair, so I gave her a wave goodbye, along with my fellow NICU roommates in room 5.
The trip in my new ATV ended at the door of Room 1. I so was nervous to meet my new roommates, but once we entered Mommy told me she remembered meeting Mia here. Mommy and Daddy met Mia and her mommy the day before I received my tracheotomy to talk with a someone who experienced what we're going through. Once we entered, I saw Mia and she was incredibly nice so I felt right at home in my new room. Once moving day was over and all my gear was hooked up, to my satisfaction, it was Mommy time. There is no place or time like Mommy time. I napped in those perfect arms for almost an hour. I'm hooked.
Later that day, I moved yet again. This time my ATV drove me up to a cold room with a long table which had a giant metal arm attached to the ceiling. As soon as we entered and parked, my nurse moved me onto the table. She grabbed a tiny tube and slipped it into a place where no man wants a tube. I was not happy with that. It entered my bladder and made me pee. It was so embarrassing. Then, to make matters worse, liquid rushed into my bladder and then they started to take x-rays of what happened. It comes out! That's what happens! It comes out! I'm only a week old and I know what happens. As soon as that debacle was over, I drove back to Room 1 and took a long well deserved nap.
Tuesday, February 3, 2009
Mommy's Arms...
This morning I woke up with what the nurses were calling a nose, on my throat. A nose? On my throat? What kind of place is this? Was I rushed into surgery last night to receive a second nose, on my throat? Hello, I have a perfectly functioning one up here...above my mouth. Once my sleepinees wore off, I realized my neck tube was no longer here! Then the nurse explained to me that my second nose was just a filter placed over my tracheotomy to keep my air clear and moist. Hey, my neck tube was gone, you can call it an ear for all I care.
Soon after that, my Mommy and Daddy walked in and they both got so excited when they saw I had a second nose. I said, "I know, it's a nose...on my throat!" We all had a laugh. I was so proud of my comedic timing.
After some people came in to talk with Mommy and Daddy, the nurse and I noticed my lungs sounded kind of goowy. The nurse looked at my Daddy and said something about suctioning. Daddy turned white as a ghost, but still nodded okay. He put on his gloves and I gave him the thumbs up then grabbed my Mommy's finger. The rest was history. Later in the day my Mommy did the same thing. I'm so proud.
Once my lungs were goo-free, it was feeding time! But wait, this feeding time was different. Oh so wonderfully different. The nurse lifted me from my warming bed, then placed me into my Mommy's arms! Oh yes, this is where I belong. In the arms of my Mommy. I fit so perfectly, as if her arms were made for me. This is what love feels like. All thoughts of second noses, all discomforts and past pains disapeared in a glorious instant. This is where I belong. My Mommy's milk never tasted so sweet. Mommy rocked me in her perfect arms until I dozed off into the most peaceful nap I've had in my entire week of life. I will never forget that moment.
The rest of the afternoon was full of pokes, prods and pricks from the nurses. Multiple times mind you. Obviously, that was not my first option. After all that was finished, I was so very tired and Mr. Sandman was knocking at my door with a full bag dust. Hey, Mr. Sandman! You are no match for my Mommy's arms.
Soon after that, my Mommy and Daddy walked in and they both got so excited when they saw I had a second nose. I said, "I know, it's a nose...on my throat!" We all had a laugh. I was so proud of my comedic timing.After some people came in to talk with Mommy and Daddy, the nurse and I noticed my lungs sounded kind of goowy. The nurse looked at my Daddy and said something about suctioning. Daddy turned white as a ghost, but still nodded okay. He put on his gloves and I gave him the thumbs up then grabbed my Mommy's finger. The rest was history. Later in the day my Mommy did the same thing. I'm so proud.
Once my lungs were goo-free, it was feeding time! But wait, this feeding time was different. Oh so wonderfully different. The nurse lifted me from my warming bed, then placed me into my Mommy's arms! Oh yes, this is where I belong. In the arms of my Mommy. I fit so perfectly, as if her arms were made for me. This is what love feels like. All thoughts of second noses, all discomforts and past pains disapeared in a glorious instant. This is where I belong. My Mommy's milk never tasted so sweet. Mommy rocked me in her perfect arms until I dozed off into the most peaceful nap I've had in my entire week of life. I will never forget that moment.
The rest of the afternoon was full of pokes, prods and pricks from the nurses. Multiple times mind you. Obviously, that was not my first option. After all that was finished, I was so very tired and Mr. Sandman was knocking at my door with a full bag dust. Hey, Mr. Sandman! You are no match for my Mommy's arms.Monday, February 2, 2009
Not again...
This morning I woke and found Mommy and Daddy speaking with several nurses and a Doctor who looked very familiar. I tried to hear the details of the conversation, but I just wasn't close enough. However, I did see the Doctor pointing down his throat at the same time turning to look my way. As soon as he left, the bus arrived and it was driven by that anesthesiologist. Not again!
Once I boarded the bus and we started to drive, Mommy and Daddy followed along behind. On the way, I asked Daddy how the Cardinals did in the Super Bowl game. He told me, "Let's not talk about it." The next thing I remember I was waking up and there was nothing in my mouth. No more tubes! So it seems that I was right all along. When I grow up I should become a Doctor. I'm way ahead of the game.
There is this strange thing, four times the size of my ET tube, sticking out of my neck. I'm not sure how I feel about it yet, but I'll have to think about it tomorrow. Nurse Nancy just came in with some "happy juice" for me.
Once I boarded the bus and we started to drive, Mommy and Daddy followed along behind. On the way, I asked Daddy how the Cardinals did in the Super Bowl game. He told me, "Let's not talk about it." The next thing I remember I was waking up and there was nothing in my mouth. No more tubes! So it seems that I was right all along. When I grow up I should become a Doctor. I'm way ahead of the game.
There is this strange thing, four times the size of my ET tube, sticking out of my neck. I'm not sure how I feel about it yet, but I'll have to think about it tomorrow. Nurse Nancy just came in with some "happy juice" for me.
The trach is in
Noah had his trach surgery this morning. It lasted for about an hour and Dr. Dunham said everything went very well. When he came out of recovery, he was "quite snowed" according to his nurse. Noah only squirmed when he needed to be changed. Both sets of grandparents came to Children's Hospital for the special event and were able to spend some time with Noah.
Right now, Noah is still hooked up to the respirator, but will be weaned off it over the next 48 hours. Although the trach is a bit scary now, it will enable Noah to be held, move to a crib and feed from a bottle. Kc and I are looking forward to what the next several days bring. We have so much to learn but are confident in our teachers at Children's Hospital.
Thank you all so much for your prayers and comments. The first thing Kc does when he wakes up in the morning is check the blog and read the comments to me. Your words are bits of love that we carry in our pockets on our way to visit Noah. "Team Noah" is carrying us through this challenging time.
Right now, Noah is still hooked up to the respirator, but will be weaned off it over the next 48 hours. Although the trach is a bit scary now, it will enable Noah to be held, move to a crib and feed from a bottle. Kc and I are looking forward to what the next several days bring. We have so much to learn but are confident in our teachers at Children's Hospital.Thank you all so much for your prayers and comments. The first thing Kc does when he wakes up in the morning is check the blog and read the comments to me. Your words are bits of love that we carry in our pockets on our way to visit Noah. "Team Noah" is carrying us through this challenging time.
Sunday, February 1, 2009
Are You Ready For Some Football...
Today was a bit of a blur thanks to Nurse Liz's "special medicine". When Mom and Dad got in this morning, Dad started telling me about this game called "The Super Bowl". I guess some guys get paid a lot of money to play catch and crash into each other. Sounds pretty cool. Dad says that the Cardinals are playing against the Steelers. I think the Cardinals should win.
Mom told me that my Nana and Aunt Melissa came to visit with me today. I don't remember seeing them, probably that "special medicine" again, but I do remember eating today. WOW! You all should really try it! In an instant I felt full and warm all over. I just have to learn to keep it all down and not spit up. There are rumors that I have to stop eating tonight. I choose to ignore them.
Before Mom left today, she placed a doll from Threads of Love next to me. Now...I DON'T play with dolls! Check out my new shoes. They have cars on them. That's what I like. I must admit, however, that this doll isn't that bad because it smells like my Mom. I guess she puts it in her bra when she's not with me. Strange, but I feel so much better when the doll is next to me.
Mom told me that my Nana and Aunt Melissa came to visit with me today. I don't remember seeing them, probably that "special medicine" again, but I do remember eating today. WOW! You all should really try it! In an instant I felt full and warm all over. I just have to learn to keep it all down and not spit up. There are rumors that I have to stop eating tonight. I choose to ignore them.
Before Mom left today, she placed a doll from Threads of Love next to me. Now...I DON'T play with dolls! Check out my new shoes. They have cars on them. That's what I like. I must admit, however, that this doll isn't that bad because it smells like my Mom. I guess she puts it in her bra when she's not with me. Strange, but I feel so much better when the doll is next to me.
Last day without a trach
This was Noah's last day without a trach. When we got to the NICU this morning, Kc and I went right to work. He cleaned out Noah's colostomy bag while I changed his diaper. I was officially indoctrinated into the "mothers of little boys" club when Noah decided to pee all over me during the diaper change. I feel so special!
Noah was able to start taking breastmilk today - his first "real" food. He has a tube down his throat that leads directly into his stomach. Up until today, they have used that tube to empty his stomach of bile. Today, they were able to give him a syringe of breastmilk and he quite enjoyed it. Unfortunately, he has to have an empty stomach for surgery, so the feedings stopped at midnight. If all goes well tomorrow, however, he will be able to begin eating by dinner time.
Because of Noah's ET tube, we have not been able to move him from his bed. Once the trach is in and he is stable, we will get to hold him again. It seems like forever since I have held my son and I am so looking forward to feeling him in my arms again.
The orthopedic doctor came today and evaluated Noah's club feet. He is confident that with casting and possible surgery, Noah will be ready to walk by his first birthday. How wonderful! The doctor will begin the casting in a few weeks - once most of Noah's surgeries are behind him.
Kc and I began our trach training today with Nurse Liz. She pulled out her "trach baby" and taught us how to replace a trach (a once weekly process) as well as suction out a trach (happens every couple of hours). It is an overwhelming process, but I know with time and practice we will begin to feel more confident.
Noah's tracheotomy is scheduled for 9:30 tomorrow morning. So many of you have been praying for Noah and we appreciate it more than you can ever possibly know. At times I feel as though it is only through the prayers of others that I am able to get through this trying time. Please pray for Dr. Dunham and his team tomorrow that they have wisdom and strength during Noah's surgery. Thank you!!!!!
Noah was able to start taking breastmilk today - his first "real" food. He has a tube down his throat that leads directly into his stomach. Up until today, they have used that tube to empty his stomach of bile. Today, they were able to give him a syringe of breastmilk and he quite enjoyed it. Unfortunately, he has to have an empty stomach for surgery, so the feedings stopped at midnight. If all goes well tomorrow, however, he will be able to begin eating by dinner time.Because of Noah's ET tube, we have not been able to move him from his bed. Once the trach is in and he is stable, we will get to hold him again. It seems like forever since I have held my son and I am so looking forward to feeling him in my arms again.
The orthopedic doctor came today and evaluated Noah's club feet. He is confident that with casting and possible surgery, Noah will be ready to walk by his first birthday. How wonderful! The doctor will begin the casting in a few weeks - once most of Noah's surgeries are behind him.Kc and I began our trach training today with Nurse Liz. She pulled out her "trach baby" and taught us how to replace a trach (a once weekly process) as well as suction out a trach (happens every couple of hours). It is an overwhelming process, but I know with time and practice we will begin to feel more confident.
Noah's tracheotomy is scheduled for 9:30 tomorrow morning. So many of you have been praying for Noah and we appreciate it more than you can ever possibly know. At times I feel as though it is only through the prayers of others that I am able to get through this trying time. Please pray for Dr. Dunham and his team tomorrow that they have wisdom and strength during Noah's surgery. Thank you!!!!!
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