We arrived in Denver and Landon did great! He slept the whole way (even on the super bumpy roads!) When we got here he wasn't super excited about the transfer and diaper change etc and calmed down for a few minutes but is getting mad again. I think he's hungry but they are evaluating him right now. So it will just take a little time to get adjusted and such but we're glad the journey is over! Thanks for the prayers. Now the docs here will just need to eval him, confirm the need for surgery and get it scheduled.
Sunday, October 2, 2011
70 miles
We're getting ready to head up to denver and it's been a busy morning! Landon has been doing good today but had a hard time falling asleep after his last feeding. Hopefully that means he'll sleep the whole way up! They showed us the little isolette he'll be in during the ride and it look s like he'll be cozy and safe (see pics) . I'll ride in the ambulance up front so I'll at least get to see and hear him on the way. Prayers that he'll be calm (and sleepy preferably) and that we won't hit any snags with traffic, etc.
We'll have to learn a whole new nicu and meet a whole new staff when we get up there but I'm so grateful we've been up there once before and know it's a great hospital with a fantastic staff. Also prayers that even if gary and I can't sleep at all today we'll at least be able to "rest" some.
Good news that we were able to get into the Ronald McDonald house which is very close to the hospital so we'll be staying there until he gets discharged. We had some dear friends organize a garage sale several weeks ago for us to raise money for baby and medical expenses and now that we're heading up to Denver some of that will be used for travel expenses. Rm house is technically free but they ask for a small donation per night. Again, we are so blessed by our wonderful friends and family. We love you all!
Saturday, October 1, 2011
Change of Plans
I think in the last post Gary mentioned the echo that was going to be done this morning. Dr Brames came in a few hours after the echo was done and told us that he feels that Landon will need the BT Shunt (1st surgery). His sats have been trending down over the last few days and Dr Brames said this is an indication of some narrowing in Landon's heart where the diminished chamber is that causes his sats to get lower and lower. As he grows and his heart beats stronger (just like all babies) the pressure will become greater, leading to an increase in the narrowing and decrease of his sats. The BT Shunt will provide an extra source of blood to the lungs that although it will allow some of the blood to mix (which is normally a bad thing), will increase his sats and hopefully make him more pink.
This is a big change from planning to take him home today, but after some of the "incidents" of the past few days and the discussion back and forth on whether or not he needs to be on oxygen, we are not surprised that he's not coming home today. It's a very difficult line to walk and it seemed for a while to vary from shift to shift based on the nurse on whether or not the oxygen was needed. We knew Dr B would be able to give us a more definitive answer on that and how things were looking. It's unbelievably overwhelming to think about sending our 1 week old into heart surgery but we're trying to process 1 day (sometimes 1 hour) at a time and trust that God knows what's best for our baby and He has a plan in all of this. It is certainly not going to be easy; we feel like the past week has been incredibly difficult and we know it's only going to get harder from here. On the bright side, Dr B did think Landon's chances of doing well through the surgery were very good based on the facts that 1) he is a good size 2) he has been eating very well 3) his sats have been fairly good overall (meaning they could be much worse) and 4) the pulmonary valve and arteries are a good size. All of these things mean that he almost missed out on the first surgery but they also give us hope that he'll make it through surgery and recovery like a champ.
The plan right now is to transport him to Denver via ambulance tomorrow afternoon (he'll be on lines, oxygen, etc) and I (Allison) should be able to ride along in the front seat. They are working on scheduling the surgery, and we anticipate it will be Tuesday or Wednesday of this week. We should be able to stay at the Ronald McDonald house near Denver Children's Hospital as long as they have a room available.
It's probably obvious that we are physically, mentally and emotionally drained (I'm not even going to bother to check this post for typos) and we haven't even gotten to the most difficult part yet. God has given us strength so far to handle what we've faced and I know he'll continue to give us what we need for each day. There are tons of details that I'm forgetting right now because I'm too braindead but if they are important enough they'll rise to the surface later and we'll include them in a future post. Thanks so much for your support and concern. So many people have offer to "do" something and we're so appreciate of that- right now it's hard to really know what things we can have people do, so please know that if we think of anything besides prayer we will give you a call.
This is a big change from planning to take him home today, but after some of the "incidents" of the past few days and the discussion back and forth on whether or not he needs to be on oxygen, we are not surprised that he's not coming home today. It's a very difficult line to walk and it seemed for a while to vary from shift to shift based on the nurse on whether or not the oxygen was needed. We knew Dr B would be able to give us a more definitive answer on that and how things were looking. It's unbelievably overwhelming to think about sending our 1 week old into heart surgery but we're trying to process 1 day (sometimes 1 hour) at a time and trust that God knows what's best for our baby and He has a plan in all of this. It is certainly not going to be easy; we feel like the past week has been incredibly difficult and we know it's only going to get harder from here. On the bright side, Dr B did think Landon's chances of doing well through the surgery were very good based on the facts that 1) he is a good size 2) he has been eating very well 3) his sats have been fairly good overall (meaning they could be much worse) and 4) the pulmonary valve and arteries are a good size. All of these things mean that he almost missed out on the first surgery but they also give us hope that he'll make it through surgery and recovery like a champ.
The plan right now is to transport him to Denver via ambulance tomorrow afternoon (he'll be on lines, oxygen, etc) and I (Allison) should be able to ride along in the front seat. They are working on scheduling the surgery, and we anticipate it will be Tuesday or Wednesday of this week. We should be able to stay at the Ronald McDonald house near Denver Children's Hospital as long as they have a room available.
It's probably obvious that we are physically, mentally and emotionally drained (I'm not even going to bother to check this post for typos) and we haven't even gotten to the most difficult part yet. God has given us strength so far to handle what we've faced and I know he'll continue to give us what we need for each day. There are tons of details that I'm forgetting right now because I'm too braindead but if they are important enough they'll rise to the surface later and we'll include them in a future post. Thanks so much for your support and concern. So many people have offer to "do" something and we're so appreciate of that- right now it's hard to really know what things we can have people do, so please know that if we think of anything besides prayer we will give you a call.
Little Landon Might be Coming Home Today!
We are trying to keep our emotions tempered but we were told yesterday that he would come home today. Last night he had a brief dip in his SATs, but is still doing relatively well. Allison and I roomed-in last night at the hospital and took care of him all night for the first time without all the monitors and cords hooked up to him. They try to do this to prevent us from being terrified at home without a monitor and encourage us to focus on him and see if his color changes from the beautiful pink that all babies should be. The pediatric cardiologist is going to do another echo on him this morning to ensure that he can in fact go home. Also, they had his hearing test redone on his right ear and passed! False alarm there!
I got an hour of sleep, but the good thing is that I have been able to let Allison finally sleep some. The poor mommy has been worried sick about him and been burning the candle at both ends trying to produce enough food for him to provide him the antibodies that are so valuable that come from her food. It was great to have Landon around all night. I am getting the hang of this father thing for now, though when my body catches up to me due to the lack of sleep this will get tough.
We have at least 9 weeks to go. Please keep praying for him. These next nine weeks and beyond are critical for him to skip that first surgery.
I have felt very blessed by the nurses that have been around us. I have learned a few tricks just being around them over the past week and feel much more ready to keep this guy happy when his body is needing something. That is it for now.
I will leave you with one last thought. I was thinking last night what Landon would say if he could speak right now... it is decidedly so that he would say.... beat the Yankees!
Gary
I got an hour of sleep, but the good thing is that I have been able to let Allison finally sleep some. The poor mommy has been worried sick about him and been burning the candle at both ends trying to produce enough food for him to provide him the antibodies that are so valuable that come from her food. It was great to have Landon around all night. I am getting the hang of this father thing for now, though when my body catches up to me due to the lack of sleep this will get tough.
We have at least 9 weeks to go. Please keep praying for him. These next nine weeks and beyond are critical for him to skip that first surgery.
I have felt very blessed by the nurses that have been around us. I have learned a few tricks just being around them over the past week and feel much more ready to keep this guy happy when his body is needing something. That is it for now.
I will leave you with one last thought. I was thinking last night what Landon would say if he could speak right now... it is decidedly so that he would say.... beat the Yankees!
Gary
Friday, September 30, 2011
Walenga Family Sleepover
(whoops, wrote this post earlier and forgot to post)
Today has been a pretty good day for everyone! I (Allison) had a long night last night since we didn't get home until about midnight and I'm still trying to pump every few hours. I called overnight to the nicu to see how he was doing and they said he had eaten about 3 oz! They was the most he had eaten by far so that was great to hear. They lowered the oxygen overnight and took him off of it at 6am to see how he'd do. His sats did good today, not in the 80s as they had been earlier in the week, but in the mid 70s or so which our ped cardio said it was good enough to let him go home. They wanted to keep him through today to make sure he'd continue to do ok without the oxygen but we should get to take him home tomorrow! Even if he does need any oxygen today, they would just send us home with a tank.
We are going to room in tonight, where they'll let us stay in a hospital room with him where he's not in the nicu or on any monitors. That way we can take care of him just the 2 of us but have access to a nurse if we need one. We're excited to finally stay with him overnight and in a little more of a normal setting with no monitors and such. It's pretty difficult to change his diaper when he has wires everywhere that we're trying not to pull off (not to mention the healing umbilical cord stump and circumcision)
So that's the plan! He's taking to breastfeeding little by little so hopefully over the next few days we'll have to supplement with formula less and less. Thanks so much for your prayers and encouragement! We are so excited at the thought that we'll be able to bring him home without surgery (for now)!
Thursday, September 29, 2011
The Roller Coaster that is the NICU
Today went pretty well for the most part. Landon continued to eat good quantities, although we're still working on that breastfeeding thing. We'll get there, he's just determined to take baby steps for now, which is ok. As long as he's eating well, we're not picky about where the food is coming from. I (Allison) have continued to make progress in the pumping department (which is more than some of you may want to know) but it can feel like one step forward, two steps back at times. Again, baby steps, this seems to be a theme for now.
Landon's SATs (oxygen saturation levels) have been pretty good for the most part this week but had a significant desat on Wednesday, which is why the pediatric cardiologist wanted him staying until tomorrow. Most "normal" babies have SATs of 92-100, and Landon has been mostly in the 80s all week. The cardiologist said he is happy with 80s or even upper occasional uppers 70s as long as they aren't sustained.
After feeding him "dinner" tonight and leaving him sleeping like a rock, Gary, my mom and I went down to get some food for ourselves. By the time we got back, the nurse on duty, Becky, was kind of messing with him and he seemed fussy. She said that his SATs had been in the low 70s for a while during his sleep (when his SATs should be relatively stable) and even dropped down into the upper 50s at one point. She put him on some oxygen to help him maintain his SATs and that helped mostly but he even dropped into the 60s once on oxygen while sleeping. He clearly is agitated by the oxygen tubes (I think I would be agitated by tubes shoved up my nose too) and that doesn't help him sleep or his sats. His SATs are greatly affected by him being upset, etc so the tubes help by giving him oxyen but keep him from sleeping very well.
It was a little bit of a shock to Gary and I to see him on oxygen since he hasn't needed it all week and his SATs have been at good levels for the most part. Becky (the nurse) said that it meant we would have to take home an oxygen tank, but I think we're not banking on going home tomorrow at this point. It would be great and we would love it, but with some of he major desats he's had today, we'll have to wait and talk to the pediatric cardiologist tomorrow about everything.
Please pray that Landon will be able to get some good sleep through the night even with the oxygen tubes. When he doesn't sleep well, then he doesn't have the energy to eat and we start this whole cycle over again (the feeding quota and the threat of a feeding tube.) We've talked about one of us staying with him through the night tonight to make sure he's doing ok and to be here to comfort him but not sure what we'll do yet. It's not the easiest place to sleep with all the monitors and alarms and babies crying but we also want him to be comforted.
Landon's SATs (oxygen saturation levels) have been pretty good for the most part this week but had a significant desat on Wednesday, which is why the pediatric cardiologist wanted him staying until tomorrow. Most "normal" babies have SATs of 92-100, and Landon has been mostly in the 80s all week. The cardiologist said he is happy with 80s or even upper occasional uppers 70s as long as they aren't sustained.
After feeding him "dinner" tonight and leaving him sleeping like a rock, Gary, my mom and I went down to get some food for ourselves. By the time we got back, the nurse on duty, Becky, was kind of messing with him and he seemed fussy. She said that his SATs had been in the low 70s for a while during his sleep (when his SATs should be relatively stable) and even dropped down into the upper 50s at one point. She put him on some oxygen to help him maintain his SATs and that helped mostly but he even dropped into the 60s once on oxygen while sleeping. He clearly is agitated by the oxygen tubes (I think I would be agitated by tubes shoved up my nose too) and that doesn't help him sleep or his sats. His SATs are greatly affected by him being upset, etc so the tubes help by giving him oxyen but keep him from sleeping very well.
It was a little bit of a shock to Gary and I to see him on oxygen since he hasn't needed it all week and his SATs have been at good levels for the most part. Becky (the nurse) said that it meant we would have to take home an oxygen tank, but I think we're not banking on going home tomorrow at this point. It would be great and we would love it, but with some of he major desats he's had today, we'll have to wait and talk to the pediatric cardiologist tomorrow about everything.
Please pray that Landon will be able to get some good sleep through the night even with the oxygen tubes. When he doesn't sleep well, then he doesn't have the energy to eat and we start this whole cycle over again (the feeding quota and the threat of a feeding tube.) We've talked about one of us staying with him through the night tonight to make sure he's doing ok and to be here to comfort him but not sure what we'll do yet. It's not the easiest place to sleep with all the monitors and alarms and babies crying but we also want him to be comforted.
Things are looking up
Today is already going a little better than yesterday. He's on a "feeding quota" of 150ml every 12 hours, which is usually over 4 feedings. Yesterday he came a little close to it but still passed and this morning he ate 75 ml in one feeding! He seems to be getting better little by little at breastfeeding but we're not there quite yet. He's getting a little bit of pumped milk but mostly formula for now.
Just wanted to post a quick update while I had a minute.
Pray that he'll take to breastfeeding so we can have that down a little better before we take him home. Earliest he can come home is still tomorrow but no certainty that he'll come home then. We can't wait to take him home with us- it's hard to leave him at the hospital every night!
Subscribe to:
Posts (Atom)
December 2012