It is such a surreal feeling when I think about Owen being 1 month old already. Then I think back further and realize that the past (almost) 8 years since Kate came into our lives has gone just a fast. Time as a parent really does not slow down at all. It's too bad this time with kids races on; there is so much to enjoy in it!
With a month left of my pregnancy, I recall thinking about trying to enjoy it as much a possible. Each kick and flutter. Each ultrasound. It is most likely the final pregnancy experience I will have (although we thought that with Andy, so anything is possible, I suppose!). I now look back to that date and wonder how that season is over and done AND now the newborn phase is nearly past as well.
Time surely does fly (when you are sleep deprived).
In one month's time we have... welcomed Owen with concerns of heart problems. Spent 6 days in the NICU. Brought a baby home on oxygen. Had another (baby) break a leg. Visited many doctors. "Adjusted" to our family of 6 status.
In one month's time we have...discovered the joy that is our new son. Seen the love of our children in welcoming Owen. Witnessed the love and support of our family and friends. Praised Him for all the things that have gone so right, despite the Down syndrome diagnosis.
There is no way to know what lays in the cards for Owen. He has so many things on his side: no major health concerns. Interventions and professional support to guide his progress. A loving family that will help him become what he wants to become. But, if this first month is any indication, there will be lots of ups and downs along the way.
This is great time to remind myself to live in the journey and not just wait to find out how it ends. "Faith is being sure of what we hope for and certain of what we do not see." I will keep the faith and my eyes to the future and all it holds for our family.
I know the days and months will continue to push on. I must remember to live in the moments and be present for my kids. As I am coming out of the newborn fog, this is key for me.
We only get one chance at this life. I will not waste it.
Wednesday, January 30, 2013
Friday, January 25, 2013
"Who told you that?"
It's been a bit, but things are still going well here. No news is good news, I suppose!
Owen is doing great. Typical baby stuff-- eat, sleep, poop. (Not always in that order, though. He really prefers to poop while eating!)
The issue we are dealing with right now for him is hearing. He has such tiny little ear canals that they are struggling to get a good hearing screen in. He has failed the hearing screen 3 times now. Today we took him to the ENT to determine whether he had some fluid in his ears. He will get a diagnostic hearing test at the beginning of February, so we are hoping for some answers then. Praying that it tells us one way or another (not a middle ground of "some" hearing loss).
Anyway, while we were at the ENT he asked what other questions we had and we asked if there was anything special we needed to do because of his absent nasal bone.
The ENT's answer, as he squished O's little nose around a bit, "Who told you that?" We explained about the ultrasound and that being the initial marker that led us to his diagnosis.
He said to forget about that. He has a nasal bone.
Hilarious! I thought he and Colton have the same nose, so I wondered the other day if Colton didn't have one either.
Oy. Vey.
So to sum up our ultrasounds vs. Owen's reality:
Reminder for mom:
This also really gets me going more on the topic of termination. But I don't have the energy to focus on that right now. All I can say is that SO many people make the decision to terminate based on the T21 diagnosis and a marker or 2 from the ultrasounds. Clearly, this is not an exact science (as much as we would like it to be) and it makes me incredibly sad that so many babies are aborted, potentially, based on inaccurate tests. I know this can be a hot-button topic, but walking the path we are, I feel a bit obligated to share my thoughts. Hey, if it caused one parent to pause about a life-altering decision-it will be worth it.
Owen is doing great. Typical baby stuff-- eat, sleep, poop. (Not always in that order, though. He really prefers to poop while eating!)
The issue we are dealing with right now for him is hearing. He has such tiny little ear canals that they are struggling to get a good hearing screen in. He has failed the hearing screen 3 times now. Today we took him to the ENT to determine whether he had some fluid in his ears. He will get a diagnostic hearing test at the beginning of February, so we are hoping for some answers then. Praying that it tells us one way or another (not a middle ground of "some" hearing loss).
Anyway, while we were at the ENT he asked what other questions we had and we asked if there was anything special we needed to do because of his absent nasal bone.
The ENT's answer, as he squished O's little nose around a bit, "Who told you that?" We explained about the ultrasound and that being the initial marker that led us to his diagnosis.
 |
| Who says I don't have a nasal bone? |
Hilarious! I thought he and Colton have the same nose, so I wondered the other day if Colton didn't have one either.
Oy. Vey.
So to sum up our ultrasounds vs. Owen's reality:
- No nasal bone present in ultrasound ---- He has a nasal bone
- Dilated kidneys seen at 24 weeks ---- Kidneys are just fine
- Pericardial effusion (fluid around the heart), which ultimately led to inducing him ---- no fluid seen by cardiologist while performing the echo on O after birth
- Thickened heart wall seen on ultrasound ---- heart wall is thickened still
Reminder for mom:
- Medical science is not perfect.
This also really gets me going more on the topic of termination. But I don't have the energy to focus on that right now. All I can say is that SO many people make the decision to terminate based on the T21 diagnosis and a marker or 2 from the ultrasounds. Clearly, this is not an exact science (as much as we would like it to be) and it makes me incredibly sad that so many babies are aborted, potentially, based on inaccurate tests. I know this can be a hot-button topic, but walking the path we are, I feel a bit obligated to share my thoughts. Hey, if it caused one parent to pause about a life-altering decision-it will be worth it.
Tuesday, January 22, 2013
Rolling along---literally!
The setting: Our living room floor
The audience: The family
The event: HE ROLLED OVER (4 times!)
We could hardly believe our eyes! I was so glad that dad was home too. (Otherwise he may have not believed me!)
The little squirt was doing his tummy time and just rolled right on over. I am still a bit in shock since he is only 3 1/2 weeks old. Yesterday he was on his side quite a bit and that surprised me too.
The funniest part: Kate saying right afterwards, "I thought you guys said it would take him longer to do things?!" Ha! Way to make us liars, Owen! :)
Tomorrow the physical therapist comes to check him out, so this should be fun.
I realize that O may not make all his milestones when we hope he does or think he should, so this is such a nice surprise--can't wait to see what he will do to surprise us next. Keep us guessing little one!
The audience: The family
The event: HE ROLLED OVER (4 times!)
We could hardly believe our eyes! I was so glad that dad was home too. (Otherwise he may have not believed me!)
The little squirt was doing his tummy time and just rolled right on over. I am still a bit in shock since he is only 3 1/2 weeks old. Yesterday he was on his side quite a bit and that surprised me too.
The funniest part: Kate saying right afterwards, "I thought you guys said it would take him longer to do things?!" Ha! Way to make us liars, Owen! :)
Tomorrow the physical therapist comes to check him out, so this should be fun.
I realize that O may not make all his milestones when we hope he does or think he should, so this is such a nice surprise--can't wait to see what he will do to surprise us next. Keep us guessing little one!
Thursday, January 17, 2013
Sharing the *big* news with the kids---warning---this is incredibly anti-climatic!
Last night B and I decided that we would talk with the kids about Owen's diagnosis. Not sure why this felt like the moment, but now that they have been around him a bit and seen that he is ok and that we have dodged so many medical issues, I felt like it was the right time.
We had bought the book We'll Paint the Octopus Red awhile ago and planned to use that to share with them. I hadn't created a lesson plan, we just felt like we would share the book and talk about how it connected with Owen and then see what questions they had.
I knew this was going to be interesting when it took several minutes to even get started reading because little ones needed drinks and snacks and such.
Kate asked if she could read the story, so she read it aloud as we all listened and watched. As we got through the book, we explained that Owen was like the little brother in the story and that he had Down syndrome. We said it might take him a bit longer to do some things, but that is why he would need our help and support and love.
Their response? Very little. They just kind of said ok and then went on about life.
Andy said something, totally unrelated to our conversation, that was funny and even Colton laughed at the moment. That is what I remember from our "talk." Moments of normal family life where kids are unpredictable and totally unaffected by the conversation that we had.
B and I just kind of laughed. Of course, I wasn't expecting a ton of questions at this point. I wasn't expecting sadness because they had no preconceived ideas about DS.
I wasn't expecting much, but I was expecting something.
As I thought about it the rest of the night, I reminded myself how this is really what I wanted. I wanted our kids to not bat an eye at this. I wanted them to take it with a grain of salt. I wanted them to see their brother and love on him and NOT think about DS.
That is the gift we have gotten from so many people, but most genuinely from our children.
O is their little brother. Period.
I LOVE that!
I am glad that it is "out there" so to speak so that if the kids hear something about it, they can ask questions. I never want this to be something we try to hide or that is taboo.
It is a part of our life now, but it is NOT our life.
The groundwork is laid and who knows what questions will spark along the way. Stay tuned for more on our journey!
We had bought the book We'll Paint the Octopus Red awhile ago and planned to use that to share with them. I hadn't created a lesson plan, we just felt like we would share the book and talk about how it connected with Owen and then see what questions they had.
I knew this was going to be interesting when it took several minutes to even get started reading because little ones needed drinks and snacks and such.
Kate asked if she could read the story, so she read it aloud as we all listened and watched. As we got through the book, we explained that Owen was like the little brother in the story and that he had Down syndrome. We said it might take him a bit longer to do some things, but that is why he would need our help and support and love.
Their response? Very little. They just kind of said ok and then went on about life.
Andy said something, totally unrelated to our conversation, that was funny and even Colton laughed at the moment. That is what I remember from our "talk." Moments of normal family life where kids are unpredictable and totally unaffected by the conversation that we had.
B and I just kind of laughed. Of course, I wasn't expecting a ton of questions at this point. I wasn't expecting sadness because they had no preconceived ideas about DS.
I wasn't expecting much, but I was expecting something.
As I thought about it the rest of the night, I reminded myself how this is really what I wanted. I wanted our kids to not bat an eye at this. I wanted them to take it with a grain of salt. I wanted them to see their brother and love on him and NOT think about DS.
That is the gift we have gotten from so many people, but most genuinely from our children.
O is their little brother. Period.
I LOVE that!
I am glad that it is "out there" so to speak so that if the kids hear something about it, they can ask questions. I never want this to be something we try to hide or that is taboo.
It is a part of our life now, but it is NOT our life.
The groundwork is laid and who knows what questions will spark along the way. Stay tuned for more on our journey!
Tuesday, January 15, 2013
New pics
Here are some pics of the little guys in the house. Colton with his first and second cast and Owen with and without his tubing :)
Monday, January 14, 2013
An INCREDIBLE day!
It was a amazing appointment for Owen today with the pulmonologist.
He spent nearly an hour with us talking, discussing and observing Owen on and off the oxygen. We have rarely had a doc spend that amount of time with us and we really appreciated it as we felt this was a big step for O. It was clear partly into the appointment, though, that he felt Owen was doing well and would not need the oxygen any longer.
AMEN!
So we now have a little guy free of all cords and tubing!!
This is a tremendous blessing as it makes traveling with the little people so much easier. Now a trip to drop off or pick up the kids from school does not appear to be a mini-adventure or so daunting a task.
Also, it means that we can actually carry our son throughout the house without 50 feet of tubing trailing behind. Phew.
Next steps for Owen include a recheck of his hearing and an evaluation by the AEA to see where we might need additional support.
We are so grateful to all who have joined us in this journey and have kept our family in your thoughts and prayers. There have been moments of worry and fear of what the future may hold, but I truly believe that we have dodged so many of the major issues that could have impacted Owen.
We realize that this is only the beginning of our journey in raising a child with potential special needs, but it has really been a blessed beginning as well.
Hug you kids tonight--they really are such a miracle in our lives!
He spent nearly an hour with us talking, discussing and observing Owen on and off the oxygen. We have rarely had a doc spend that amount of time with us and we really appreciated it as we felt this was a big step for O. It was clear partly into the appointment, though, that he felt Owen was doing well and would not need the oxygen any longer.
AMEN!
So we now have a little guy free of all cords and tubing!!
This is a tremendous blessing as it makes traveling with the little people so much easier. Now a trip to drop off or pick up the kids from school does not appear to be a mini-adventure or so daunting a task.
Also, it means that we can actually carry our son throughout the house without 50 feet of tubing trailing behind. Phew.
Next steps for Owen include a recheck of his hearing and an evaluation by the AEA to see where we might need additional support.
We are so grateful to all who have joined us in this journey and have kept our family in your thoughts and prayers. There have been moments of worry and fear of what the future may hold, but I truly believe that we have dodged so many of the major issues that could have impacted Owen.
We realize that this is only the beginning of our journey in raising a child with potential special needs, but it has really been a blessed beginning as well.
Hug you kids tonight--they really are such a miracle in our lives!
Thursday, January 10, 2013
Still have not lost my mind...but the night is young!
Well after the last few days, I am thinking that my New Year's resolution is really being tested.
And it is only January 10.
It is most concerning when I hear the tone in people's voices or messages. They are making sure I am still partially sane and I appreciate it. I feel like a potential train wreck ready to happen. I told B tonight that this must be how Lindsay Lohan feels all the time;)
We had a good day. Grandma toted Colton around the house and he took a good long nap. He is uncomfortable, you can tell, but not screaming and generally in good spirits. B said at the ER, he even held his leg up when they splinted it. The doc said they usually have to hold kids down for that part... He is one tough little squirt and I have much to learn from him, too.
Today we took him to the orthopedic doctor and it was really good news! No break through the bone; it is a "buckling" of the bone. That means he only needs the cast for 3 weeks and should be as good as new! What great news!!
The funny part is when the tech was wrapping the new cast...She said she would probably see us back before then because the little guy might wiggle out of his cast! He is really scooting around and on the move again, so I won't be surprised to soon find him in one place and his cast in another!
We also had Owen's 2 week check up today. It was relatively uneventful, which I was grateful for. I am also grateful for a doctor who is thorough and checks on things. We had a great conversation about Owen's start to life and where to go from here. She even had a list of questions for me! It was wonderful to feel heard and understood.
So all in all, I have not lost my mind (yet).
I even got a shower today.
Thanks for all your prayers for the little guys in the house. I keep hearing the phrase "this too shall pass" and I really know it will! We are really so lucky and blessed that all we have encountered recently has turned out very well. Instead of complaining about not showering or napping, I could be complaining about preparing for open heart surgery, orthopedic surgery or worse...Praise Him that is NOT the case for either little guy!
Perspective is a glorious thing and an easy gut-check for me lately. We are incredibly lucky and blessed.
This too shall pass.
And it is only January 10.
It is most concerning when I hear the tone in people's voices or messages. They are making sure I am still partially sane and I appreciate it. I feel like a potential train wreck ready to happen. I told B tonight that this must be how Lindsay Lohan feels all the time;)
We had a good day. Grandma toted Colton around the house and he took a good long nap. He is uncomfortable, you can tell, but not screaming and generally in good spirits. B said at the ER, he even held his leg up when they splinted it. The doc said they usually have to hold kids down for that part... He is one tough little squirt and I have much to learn from him, too.
Today we took him to the orthopedic doctor and it was really good news! No break through the bone; it is a "buckling" of the bone. That means he only needs the cast for 3 weeks and should be as good as new! What great news!!
The funny part is when the tech was wrapping the new cast...She said she would probably see us back before then because the little guy might wiggle out of his cast! He is really scooting around and on the move again, so I won't be surprised to soon find him in one place and his cast in another!
We also had Owen's 2 week check up today. It was relatively uneventful, which I was grateful for. I am also grateful for a doctor who is thorough and checks on things. We had a great conversation about Owen's start to life and where to go from here. She even had a list of questions for me! It was wonderful to feel heard and understood.
So all in all, I have not lost my mind (yet).
I even got a shower today.
Thanks for all your prayers for the little guys in the house. I keep hearing the phrase "this too shall pass" and I really know it will! We are really so lucky and blessed that all we have encountered recently has turned out very well. Instead of complaining about not showering or napping, I could be complaining about preparing for open heart surgery, orthopedic surgery or worse...Praise Him that is NOT the case for either little guy!
Perspective is a glorious thing and an easy gut-check for me lately. We are incredibly lucky and blessed.
This too shall pass.
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