I almost can't believe it! This week has felt like months, but we were able to bring our Elliot home today! His morning started very early with shots, hearing tests, that fun little surgery for boys, and another chest x-ray. The x-ray is still of concern as it does not show any improvement from the first two. The good thing is that Elliot is breathing fine, eating fine, and showing no clinical signs of a problem. The Dr's do not know at this point why the x-ray has not cleared even after 7 days of strong antibiotics. We are to have another chest x-ray on Monday (outpatient) and will see his pediatrician afterwards. If the chest x-ray still does not show improvement then he may have to have a CT scan. He didn't pass his hearing test either so we will have having another one next week as well. I don't think they were concerned about his hearing too much and are hoping after being home a few days they will get a better reading.
I saw my Dr on the way out and all seems to be healing fine. I will have my bladder scan 1 week from today and hopefully be able to say goodbye to my little "friend" if it shows that everything has healed.
Poor Noah has the flu and is a sick little boy. We have heard that the current strain of flu virus is taking about a week to manifest. Zane had it the day Elliot was born so it has been exactly 1 week. He has a slight fever and has been sleeping all day. He won't eat or drink and has had a few episodes of wretching as well. We are hoping he has a quick recovery and that neither Brian and I will catch it. Elliot should be protected according to the Dr's because I am breastfeeding. I hope they are right. Zane's was jut 24hours, so I am praying Noah is feeling better by tomorrow. I can't stand seeing him so miserable and I can't even hold him...
We wanted to thank everyone so much for all the phone calls, messages, cards, gifts, visits, ect, ect. Everyone has been so wonderful and we can't tell you how much we appreciate each of you and what you have done for us. We are so grateful to our parents as well for watching the kids for us this past week. I know they both had a great time spending so much time with you! We just can't convey how much it means that you are there for us, without hesitation, especially when the unexpected happens. We are hoping for a drama-free lifestyle from now on! :)
Tuesday, February 24, 2009
Monday, February 23, 2009
Day #6 and #7
Yesterday got away from me a bit so I wasn't able to update, but I wanted to thank whoever it was that sent Elliot his manual on "How to behave in the NICU". Either that or Noah was whispering in his ear, but Elliot is doing awesome. As of now, he is exclusively breastfeeding every 2.5 - 3 hours with no supplement. They pulled his NG last night and he is still having tons of wet diapers so they haven't had to put it back in. He had a really rough night on Saturday...the IV in his hand went bad and they tried for 2 hours and 7 sticks to try and get it back in and were still unsuccessful. They had to give him one of his doses of antibiotics intramuscular (or whatever they call it) in both of his thighs. All of the nurses felt bad and they took turns holding him and apologizing! They were considering a pic line for the remainder of his antibiotic treatment but decided to wait till morning and call in another nurse that was pretty good. Fortunately she was able to get it on the second try. Appears he has very fragile veins like his brother. So, our plan for now is to keep him going with breastfeeding, finish the antibiotics and repeat the chest x-ray and blood work. His last dose is sometime tomorrow, so provided everything else goes well we are hoping they will still let him go. They told us due to the respiratory and lung issues he started with they have told us no public places for 6 weeks. Hmmm....sounds familiar. :)
Thanks again for checking on us, things couldn't be any better at this point! Hopefully we can post next time from HOME!!!
Thanks again for checking on us, things couldn't be any better at this point! Hopefully we can post next time from HOME!!!
Saturday, February 21, 2009
Day #5
Still hangin' out.....
We had a talk with Elliot's Dr this afternoon in regards to his progress with feeding and such. She said that Elliot is still not doing well with breastfeeding or the bottle and is not taking near enough to keep himself hydrated, therefore still requiring the feeding tube and IV fluids. She said that he is becoming jaundice and that may also explain his lethargic appetite. He is not yet to the point of needing lights but they will draw another level in the morning. His PDA sounds even better today though. By the way she was talking today, Tuesday may no longer be Elliot's golden ticket out the door. We are still hopeful that he will have a turn around in the next day or so. He has some awsome nurses that have alot of faith in him that he can do it!
I was discharged this afternoon so in between feedings tonight Brian and Noah picked me up and we actually went home for a little while. It was great to just hang out and watch Noah play with toys! He was back to loving me again as well! I think he has really enjoyed the past few days with Grandma! He is walking so much and eating like a champ! He seems so happy! Zane is doing great and is really looking forward to his little brother coming home soon. He told me he will help get Noah in and out of bed when I get home since I still won't be able to lift him for awhile :) What a great big brother! I am staying with Elliot in his room tonight and I must say they are quite accommodating - I even have my own minifridge! His room is big and super quiet and has a bed to sleep on so it isn't going to be that bad at all!
Friday, February 20, 2009
Day #4
Elliot is still doing well! Not much new to report. We are still working on feeding every three hours. He will have a good feeding one time and not so good the next. Brian and I both think their expectations of the amount he should be taking is waaay to much. He still has quite a bit of residual at each feeding so we know he's not hungry because he has too much in his belly from the previous feeding. The nurse tonight told me that realistically he needs to be eating better by this point in order to go home on Tues. In our minds, we know Elliot is an overall healthy baby, he has no breathing problems, there is no reason he can't eat, he just can't tolerate the volume they expect him to take. The NG tube bothers him tremendously as well. Our bet is that if they let him take what he wants and pull that tube, he will do just fine on his own. We will cross this bridge when we come to it with the Dr's.
I am being released tomorrow and will take camp in Elliot's room to continue working on feedings. I think Brian and I are going to take turns as well so I can go home for awhile. I got to see both the boys tonight! Even though I kept a safe distance from Zane, since he was sick earlier, it was great to visit with him for a few minutes and get the latest scoop on his day. Noah came up for a bit and had dinner with us. He really is mad at me! I am going to have to win his heart back when I get home!
I am being released tomorrow and will take camp in Elliot's room to continue working on feedings. I think Brian and I are going to take turns as well so I can go home for awhile. I got to see both the boys tonight! Even though I kept a safe distance from Zane, since he was sick earlier, it was great to visit with him for a few minutes and get the latest scoop on his day. Noah came up for a bit and had dinner with us. He really is mad at me! I am going to have to win his heart back when I get home!
Thursday, February 19, 2009
Day #3
Just a quick update....
Elloit is doing well! His respirations are down so we have begun the feeding challenge. I am attempting to nurse him every 3 hours and then offer the bottle and then leftovers go in through the feeding tube. So far he is not latching on and only takes about 5 of the 45cc by mouth that we are offering. He has a long way to go, but it's only the first day of oral feeds! His echo was done this morning and the results came in tonight that the murmur is just the PDA that hasn't quite closed but is on its way. We really weren't expecting anything to come of it, but it was very reassuring to have it come back with a good result. They repeated a chest x-ray today as well and found that it is not improved from Tuesday. This basically means that the fluid they saw right after birth is most likely infection after all. They will now continue the antibiotics for the full 7 days. So, as long as he is taking all of his food by mouth, he can come home next Tuesday! Sadly that means I will be leaving before he will, but they have private NICU rooms, so I will be able to come stay with him overnight. We are really working hard to get his feeding going, so I don't want to miss those night feedings. Tonight will be the first night I will be getting up every 2.5 hours to pump and try and feed him so I will be getting a good taste of what having a newborn is really like!
I think Zane has made a full recovery from being sick earlier and Noah is doing great! I miss them like crazy and absolutly can't wait to get everyone home together again!
Elloit is doing well! His respirations are down so we have begun the feeding challenge. I am attempting to nurse him every 3 hours and then offer the bottle and then leftovers go in through the feeding tube. So far he is not latching on and only takes about 5 of the 45cc by mouth that we are offering. He has a long way to go, but it's only the first day of oral feeds! His echo was done this morning and the results came in tonight that the murmur is just the PDA that hasn't quite closed but is on its way. We really weren't expecting anything to come of it, but it was very reassuring to have it come back with a good result. They repeated a chest x-ray today as well and found that it is not improved from Tuesday. This basically means that the fluid they saw right after birth is most likely infection after all. They will now continue the antibiotics for the full 7 days. So, as long as he is taking all of his food by mouth, he can come home next Tuesday! Sadly that means I will be leaving before he will, but they have private NICU rooms, so I will be able to come stay with him overnight. We are really working hard to get his feeding going, so I don't want to miss those night feedings. Tonight will be the first night I will be getting up every 2.5 hours to pump and try and feed him so I will be getting a good taste of what having a newborn is really like!
I think Zane has made a full recovery from being sick earlier and Noah is doing great! I miss them like crazy and absolutly can't wait to get everyone home together again!
Wednesday, February 18, 2009
Day #2
The past two days have been a whirlwind to say the least!! I will make you all aware that I am on some really good drugs right now, so you can't hold me accountable for misspelled words or improper use of grammar. :)
We were finally able to hold Elliot for the first time! I just can't get enough of him! I am not sure where the black hair comes from, but it is so soft and silky. I think he could seriously do hair commercials! His breathing is still too fast so I have not been able to nurse him yet, but I am pumping for him until I can. For now he is being fed through a feeding tube and is up to about 30cc every 3 hours. He is doing great and really lets you know when he is hungry! Now that I have been able to get up and about a little more, we have been able to be there for his feedings and Brian even changed a couple of diapers! We met with the Dr this afternoon and they informed us that they have detected a heart murmur. They are going to do an echo cardiogram first thing in the morning to let us know what we are dealing with. The fact that he has the murmur coupled with the breathing issues is causing some concern, but it could still be a very minor issue. If the echo comes back fine, only showing the murmur that is able to just be monitored then they will go back to focusing on the breathing and feeding. He must be breathing under 60 in order to try to nurse or bottle, and must be taking all of his feeds by mouth for 2 days in order to come out of NICU. Hopefully we will have more answers tomorrow after the results of the echo.
I am still hoping to be discharged on Saturday. The whole bladder issue has not been fun, but they say each day will get easier as far as healing goes. I was really hoping that Elliot and I could go home together, but I am not sure if that is going to be the case or not. Alot can happen in a few days though so we are still hoping for the best.
Noah and Zane are doing well. Noah is having a great time with Grandma and Grandpa Baker and he has been able to meet his little brother for a few minutes. Poor Zane got the stomach flu yesterday so he is recovering with Grandma right now. I felt so bad for both of them!
I will update tomorrow when we know more!
Tuesday, February 17, 2009
Elliot Joseph Baker has arrived!
IT'S A BOY!!!!
What a day it has been! We arrived at the hospital at 6:30am and much to our surprise they started prepping and had me back in the OR by about 8:00. Everything started off well as far as the spinal and such. Dr Bhat was humming his way through the beginning of surgery as was going as planned at first. Once Elliot popped his head into the world we noticed the cord wrapped around his neck and he was a lovely shade of blue. Once the cord was cut they took him over to be checked out. Right away it was found that his blood sugar was very low and he was having problems breathing. After a few minutes and a quick hold by Brian, they decided to take him to NICU.
Meanwhile....Dr Bhat has stopped whistling and began to tell me of the "ridiculous" amount of scar tissue he was finding. He said "it is a total mess in here and I am getting out". My uterus, abdominal wall, and bladder had become totally fused together. During the process my bladder was cut as well. He stated at this point it was not safe to continue with the tubal so he closed everything up and finished. As a result of the bladder injury I will come home with a lovely parting gift for the next two weeks....a catheter!! Once it is determined that my bladder is healed, I will be able to have it out.
Back to the NICU....Elliot had a chest x-ray and his lungs were found to be pretty full of fluid, which is not a big surprise for a c-section. They gave him sugar and got his levels back to normal but his breathing has continued to be labored. Fortunately he has not needed c-pap or the vent and is just working it out on his own for now. We were not able to touch him or hold him until his respirations were under control. They have steadily been improving so I don't expect it to be long. He was also started on antibiotics for possible infection. We are hoping his NICU stay is in the neighborhood of a week or less. These issues are common for c-section babies and although it is NOT what we expected, it could always be worse!
This day has been soooo long, so we are off to get some sleep, and hope tomorrow we will be able to hold our little man, feed him (and me!) and have news of a continued good recovery. Thank you all again for your thoughts and prayers! More pictures soon!!
Sunday, February 15, 2009
Tick Tock, Tick Tock...
Two more days to go! I have officially become a nervous wreck. I just want to get through all the needles and surgery part and fast forward to where they confirm the baby is fat and healthy! We, once again, have our parents to thank for taking care of Noah and Zane while I am in the hospital this week. You are our saving grace yet again!
Zane is getting pretty excited and doesn't really want to go to school Tuesday, but I assured him he can come see the baby as soon as possible. Noah doesn't have a clue what's going on, other than his mom is a crazy person right now.:)
We are going to bring our laptop, but I have no idea when or if we will be able to update on Tuesday. We will try our best to get pictures and details as soon as possible, but if you don't hear from us till Wed, don't panic!
Thank you again for all the prayers and well wishes! We are so thankful for all of you!!
Friday, February 6, 2009
Thursday, February 5, 2009
All is well!!
Life has been quiet and uneventful, which as always, is refreshing!
Zane is doing well and will finish up the end of basketball season this weekend. He's already asking when football starts. He continues to be active in cub scouts and is working on getting his car ready for the derby races in two weeks. I was informed that I would not be aloud to help because I am a girl....:) Oh well, truthfully he is right, I wouldn't know where to begin! 3rd grade is still going well, although I received a call from his teacher this week about some issues. Homework is beginning to be a daily battle with him and I had emailed for some suggestions and it turns out she was having the same issues with him at school as well. It is amazing what is learned during conversation between parent and teacher! So, of course Zane is mad at both of us for conspiring against him and we have foiled his plans for avenging his 3rd grade career!
Noah is plugging away! His eating is still hit or miss, although we see a hit more than a miss lately. We finally saw a weight increase for the first time in months! He is still taking a few steps on his own here and there and can stand up on his own now without pulling up on something. We know that he still has issues with his legs, knees and feet though. He won't bend his knees when he takes steps because they are so stiff. Unfortunately we have really hit a wall with therapy. His PT and I discussed last week that she has been coming for over a year now and Noah still demonstrates extreme anxiety. She is unable to touch him and he will do nothing in her presence. I think we are now going to start looking at outpatient programs and other options. Those of you who have been around him have seen his anxiety issues. Very seldom in the presence of other people in our home and most always at other people's homes, will he want to be out of our laps and won't get down and play to save his life. If we set him down or walk away his whole body will tremble and his heartrate is through the roof. He has very little trust for anyone. At home with us, he is a holy terror and into everything! I must say it is getting better with our friends and family, but therapy and Dr's don't stand a chance.
Within the last couple of weeks I was able to reunite with 4 other CDH moms from the U of M. It was the first time we all met together outside of the hospital and left the kids at home! They have been such a saving grace during the last 2 years and I am so blessed to have them to relate to, bounce ideas off of, and laugh and cry our way through this adventure! We also had a great visit from the Ellingers this past weekend! Mason was Noah's roommate while on ECMO and although they have spent lots of time together at the hospital it was great to have them all here and really let the boys play together. Noah really let his guard down and played so well. Even Zane got in on the fun!
I went to the Dr for Baby Baker this week and officially scheduled my c-section and tubal for Feb 17th! 11 days!!! We are so excited!! My c-section is scheduled for sometime in the morning, but not the first case, so I really have no idea what time we will get settled into a room. I am assuming sometime in the afternoon.
Thanks for checking in on us!
Zane is doing well and will finish up the end of basketball season this weekend. He's already asking when football starts. He continues to be active in cub scouts and is working on getting his car ready for the derby races in two weeks. I was informed that I would not be aloud to help because I am a girl....:) Oh well, truthfully he is right, I wouldn't know where to begin! 3rd grade is still going well, although I received a call from his teacher this week about some issues. Homework is beginning to be a daily battle with him and I had emailed for some suggestions and it turns out she was having the same issues with him at school as well. It is amazing what is learned during conversation between parent and teacher! So, of course Zane is mad at both of us for conspiring against him and we have foiled his plans for avenging his 3rd grade career!
Noah is plugging away! His eating is still hit or miss, although we see a hit more than a miss lately. We finally saw a weight increase for the first time in months! He is still taking a few steps on his own here and there and can stand up on his own now without pulling up on something. We know that he still has issues with his legs, knees and feet though. He won't bend his knees when he takes steps because they are so stiff. Unfortunately we have really hit a wall with therapy. His PT and I discussed last week that she has been coming for over a year now and Noah still demonstrates extreme anxiety. She is unable to touch him and he will do nothing in her presence. I think we are now going to start looking at outpatient programs and other options. Those of you who have been around him have seen his anxiety issues. Very seldom in the presence of other people in our home and most always at other people's homes, will he want to be out of our laps and won't get down and play to save his life. If we set him down or walk away his whole body will tremble and his heartrate is through the roof. He has very little trust for anyone. At home with us, he is a holy terror and into everything! I must say it is getting better with our friends and family, but therapy and Dr's don't stand a chance.
Within the last couple of weeks I was able to reunite with 4 other CDH moms from the U of M. It was the first time we all met together outside of the hospital and left the kids at home! They have been such a saving grace during the last 2 years and I am so blessed to have them to relate to, bounce ideas off of, and laugh and cry our way through this adventure! We also had a great visit from the Ellingers this past weekend! Mason was Noah's roommate while on ECMO and although they have spent lots of time together at the hospital it was great to have them all here and really let the boys play together. Noah really let his guard down and played so well. Even Zane got in on the fun!
I went to the Dr for Baby Baker this week and officially scheduled my c-section and tubal for Feb 17th! 11 days!!! We are so excited!! My c-section is scheduled for sometime in the morning, but not the first case, so I really have no idea what time we will get settled into a room. I am assuming sometime in the afternoon.
Thanks for checking in on us!
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