Category Archives: New Baby

A New Space

It’s a new year and I’ve decided to move into a new space for writing.  I have come to the conclusion that I view Like Olive Shoots similarly to how I view many of Reece’s things.  They have become somewhat untouchable and I am heavily into “preservation mode”.  I plan on keeping this blog the way it is; it will remain active for the time being as I believe it is purposeful and something that people reference and have a need to visit from time to time.  Our family also needs it for reference in many ways.  It feels a little strange to be writing primarily somewhere else, but it also feels right.  Thank-you for respecting this space and for your support, which has and continues to be incredibly meaningful to our family.

Feel free to check out my new site: www.lifeafterthursday.com

Thank-you for sharing in this journey; it has been an honor to write on behalf of Reece and our family.

Terri

 

Leave a comment

Filed under Bone Marrow Transplant, Family, Journal Entries, New Baby, This and That

I LOVE Good News!

As you have probably already guessed, we received word back today that Scarlett’s bump is benign.  Woohoo!!!  It is a routine dermoid cyst that was growing inside the bone.  I am told it is a “classic” dermoid with nothing to be concerned about other than doing two follow-up MRIs (three months and 15 months post-op) to ensure they removed all of it.  If, by chance, they did not get it all, it could continue to grow.  However, dermoid cysts are singular events, meaning they neither grow back (unless part of it was accidentally left behind), nor occur elsewhere in the body.  It would have had to have been removed at some point, as it would have continued to grow and create spatial issues for Scarlett.  The doctor was pleased that we removed it when we did.  Scarlett has recovered well and is basically back to her happy, laid-back self.  We are glad to be receiving good news and now are shifting our focus back to our life with our girls, managing our grief, and figuring out where to direct our parental energies dedicated to Reece (more on this last part later).

I know I have been hopping back and forth on what to do with this blog.  For now, I will continue to post here, versus starting a new blog.  Long story short, Terry and I agree that this one feels like home.

10 Comments

Filed under Family, New Baby

The Plan

All things considered, the morning at Amplatz went well.  Scarlett was a champ and very tolerant of everything.  She is definitely her brother’s sister.  She was a bit frustrated this morning when we arrived in that she was hungry and in need of a bottle.  She was given a pacifier and fell asleep for the remainder of the waiting period prior to anesthesia.  She handled the MRI well–including intubation–and came out of sedation a happy and hungry girl.

We met with her doctor a few hours later.  While the radiologist had not yet read the MRI, the neurosurgeon felt that the bump did not look “aggressive”, which means he does not believe it is cancerous.  Again, there is no way to know until they remove it and test it.  He gave us the option of either having it removed in the near future or waiting to see what it does.  The “wait-and-see” option is not even on our radar screen.  We are bringing her in this coming Monday to have the bump removed.  We are told this is a routine procedure…done several times a week.

Bringing her in for surgery is not as straightforward for us as it sounds.  Even though this procedure is “routine”, it forces us to be back in places that have difficult memories.  It turns out that she will need to stay overnight to be monitored.  The doctor said she didn’t necessarily need to spend the night, but if something happens from a pain perspective, they would be able to manage it better in the hospital, and therefore recommends that she stay at least a night.  It turns out she will need to stay in the PICU for that night, since she is having an operation on her head.  Yes, you read that right…the PICU.  This is the same PICU we just spent 2.5 weeks in with Reece at the end of his life.  But, we came to the conclusion that we know the doctors and staff there and that is worth a great deal to us.  If you have to be in a hospital, it is always helpful to know who you are working with.  So, we will be forced to deal with fresh feelings and hard memories even moreso than we realized.  It is very, very strange to be going there again with another child and so soon after Reece’s passing.  Scarlett’s surgery will come one month and one day after the day Reece passed away.  However, I was thinking on our drive home that Reece would be thinking it is cool to have his sister stay in the same hospital and on the same floor, if he was here.

After the bump is removed, they will send it for testing.  We should know about a week later if there is anything concerning that they find.  And that’s all I have for tonight because, quite frankly, I am tired of thinking about health and hospital stuff for today.

Thank-you for praying for Scarlett and our family.

4 Comments

Filed under Family, New Baby

Scarlett

I was preparing to pack up this blog and move my stuff to a new home, but I guess that plan is temporarily on hold.  More accurately, I may be typing on both sites for a while.  I have not posted much about our third child, Scarlett.  Our third adorable little peanut was born at the end of April.  She has been such a trooper and my sidekick.  She is a great eater, a great sleeper, and very laid back.  Unfortunately, we now have some concerns with her that are unrelated to Reece and his diagnosis.

About a month after she was born, we were sitting in the BMT clinic and I noticed a small bump on her forehead, near her temple.  Over the course of the next month, I showed many BMT doctors the bump.  They were not concerned, more curious.  During Scarlett’s two-month well check, our pediatrician was not overly concerned, but knowing our situation with Reece decided to have an x-ray performed to put our minds at ease.  It came back normal, but she referred us to Reece’s dermatologist at the U of MN, as they are a pediatric specialist group.   Dermatology was also not concerned, so they referred us to Neurosurgery at the U of MN for removal of the bump.

I hemmed and hawed over whether we should have this treated at the U of MN, considering our history there with Reece.  I ultimately came to the conclusion that we know the U of MN, they have great doctors there, and if anything critical should happen, I would prefer it to be at the same hospital.

So, today, Scarlett had her initial consultation with Neurosurgery.  They, also, were not overly concerned about the bump.  They do not feel it is cancer.  They also don’t think it is a routine dermoid cyst as it feels like actual bone.  Nevertheless, they need to do an MRI to understand what exactly it is.  This will happen this coming Thursday.  Once they determine what it is, they will likely schedule an operation to remove it.  The doctor told us that statistically, it is unlikely it is anything concerning.  Unfortunately, those words mean very little to us at this point.  The rest of the day just felt heavy.  We have no reserves right now.  I feel resentful that Reece’s passing is so fresh and yet we will be right back into Amplatz with another concern.  I hate the waiting period.  I have no reserves.  We have hard memories in the OR of Reece.  I have no reserves.  I do not want my three-month-old to have to go through anything concerning.  Even the preparation for sedation will be upsetting as she can not eat for at least four hours prior.  We know this routine all too well.  I have no reserves.  I have no reserves.  I have no reserves.

Anyway, I know the likelihood isn’t high that this will be anything other than a benign cyst.  But, after Reece’s ordeal and all of the rare things he suffered through from his diagnosis to his BMT complications, I struggle with “likelihood”.  I respectfully ask that you do not send me information on all the bumps you may have experienced with your own children or grandchildren.  All of the info in the world can not really do much for my mental state.  You see, I know the rational side of the bump.  My problem is…I have no reserves.  And I am no longer naive to the hospital routine.  I know that the best doctors in the world do not always have answers.  In fact, they often don’t and they are the first to tell you so.  God’s plan is God’s plan.  So tonight, I am sitting here thinking, “God, please don’t start teaching us more lessons about life.  We’ve had enough learning for a while.”  Please, this time, let what I want also be what He wants.

Thanks for your continued prayers.

5 Comments

Filed under New Baby

Home

It’s been a busy few days of low-key living.  That’s really the only way to describe our first days at home.  Reece has done very well, all things considered.  We have been to clinic for the last three days, which has been exhausting for him.  It is so much more activity than he is used to…when he gets home, he basically has to nap for an hour or two.  His temps have been down, his weight has been down.  We have fared pretty well with managing medicines and procedures out of our home.  We knew it would become more routine and it has, although we still have a long way to go to get into feeling normal. 

A few things are concerning to me.  First, Reece’s appetite has decreased in the last couple of days.  Second, he has been vomiting at home, although he has no fever as of yet and no other signs of illness.  Third, he is on a massive amount of diuretics, which are annoying his kidneys.  I believe that these things will resolve themselves, but it would be good to see that resolution soon.  His diuretics have begun to be tapered already. 

Yesterday was my last day in clinic until I have the baby.  I go in this morning to get the final game plan, but if all else fails, I have a c-section scheduled for Monday morning.  Last Monday, the baby had flipped into the correct position, but had not dropped, so they would not induce labor.  If she is still in the correct position (I am very skeptical that this is the case), they will begin induction on Sunday evening.  If not, they will proceed with the version/c-section plan on Monday.  Regardless, I am ready to go; I still can’t believe that we will have a newborn in a few days!

Britta will be back to our home next week–yay!  Hooray for my two-year-old and all of her energy being back in our home!

It’s strange being at home right now, but a good strange.  It is the calm before the storm meets the calm after the storm.  I realize that anything can still happen with Reece’s health, but now that things seem to be leveling off a little, it almost makes me feel more paranoid that it will all be snatched away.  Truly, I feel more on edge about “smaller” things with Reece than I did in the hospital and more on edge about the baby (especially if she is moving, paranoia about the birth, etc) than I ever have before.  I chalk it up to the realization about the fragility of life.  I know life doesn’t work this way, but again, when the benefit of the odds being with you has not transpired as such, you begin to feel like that benefit will never be with you.  It isn’t rational, but it has been a part of our reality for so many months that it will take some work getting back to relaxation regarding life.  Additionally, our family feels like it is in infancy again.  It takes many hands to make our life run right now…doctors, nurses, family members, friends, nanny, cleaning lady, grocery delivery, home care people.  I hope we continue to trend towards independence for our sake and the sake of all involved.  When I first left my home after high school, I struggled with the independent nature of adulthood.  I craved having people help me out–I wanted, in some odd way, to not be left to my own devices.  Now, well into adulthood, I realize what a gift it is to be able to manage one’s life independently.  It’s a sign of health–all around health–when you aren’t having to rely on other people just to get through the daily tasks of life. 

Is it possible that next week our family of five will be together?  I am praying that it will happen.

3 Comments

Filed under Bone Marrow Transplant, New Baby

Day Plus Eighty-Eight

It turns out the Reece’s weight–surprise!–went up over the last few days and he had some breathing issues yesterday.  So, the doctors pumped him up with diuretics and it is back down today.  His breathing is ok, but they need to take a few days to figure out what type of diuretic combination will help him keep his weight down.  I’m just going to say it–these damn steroids are driving me crazy!  Sorry, but it had to be said.  I feel strongly that once he gets home and starts moving around more, his body will become much more proficient at managing his weight.

Other than the weight/breathing issue, he is looking good.  He has done pretty well off the TPN, so hopefully that continues to go well.  He finally slept last night which means Terry got some good sleep–when Terry gets good sleep, everyone is happy.  🙂  We aren’t coming home this weekend, but hopefully early next week.

In baby news, I received a call from my OB yesterday who said she would be open to have a doc try an external version on the baby, just prior to a scheduled c-section, to see if the baby will turn to the right position.  If she does turn, they would induce me that day; if she does not turn, they would proceed with the c-section.  There are risks to both the version and the c-section, but I am happy that I have another option.  I met with a different OB (again, my OB no longer delivers babies) this morning to schedule both the version and the c-section.  It turns out that the day she would be able to do it falls on a Sunday and the OR will not schedule c-sections on a Sunday.  So, they are 99% certain that we will be scheduled to proceed on Mon, April 30, assuming I can get in on the schedule with one of the docs who will be in the OR that day.  I should know this coming Monday what the official day will be.

Prayer Requests:

  • Reece’s weight issues to resolve; doctors to find the right combination of diuretics to keep him stable
  • No further lung issues; resolution of breathing problems
  • Successful taper of steroids; no further flare-ups; protection from GVHD
  • Protection from infections and fevers
  • Continued progress in BMT
  • Discharge, remission, life
  • For Baby–healthy delivery, general health
  • For Family–peace and sanity among complete shake-up in life circumstances

Many thanks.

1 Comment

Filed under Bone Marrow Transplant, New Baby

A Quick Update

It’s been a few days, so here’s a quick update.  The weekend overall went well for Reece.  He continues to recover from his latest oxygen bout, but overall, he is doing very well.  We are starting to feel trapped in the cycle of Reece gaining momentum, having a minor setback, new doctor rotates on, takes awhile to get up to speed, delay because of predictable and avoidable complications, another minor setback, and so on.  Hopefully, we will be out of here this week, but I’ll admit I am not planning on it.  You can tell Reece has maxed out on his being here and ability to be motivated to improve while here.  You can’t blame him–he is the veteran on the floor.  No one else has a transplant date even remotely close to his, although there are a few kids that have been discharged and have returned.  His recovery will likely increase dramatically once is at home and able to be in a different environment.  I’ll keep you posted.

Prayer Requests:

  • Complete wean off of oxygen
  • Continued progress in BMT and freedom from fevers/infections
  • Regulation of weight to avoid further lung setbacks
  • Discharge, remission, life

In baby news, it looks like we will be scheduling a c-section, as this baby does not want to go into the proper position.  It isn’t because she can’t move around.  She has done a complete 360 degree turn in the last week–but has stayed in a breech position.  She looks good when she is monitored, but I am meeting with a doctor this Friday to schedule the c-section, in case she doesn’t turn and go on her own.  The good part about that is I will know who will be delivering the baby (my doctor no longer works in labor and delivery) and I will be able to prep her for the cord blood collection.  The not-so-good news is that Reece has many physically demanding needs…both for him and for us.  Adding a c-section into the mix seems like one more added complication.

Prayer Requests:

  • Baby to turn to correct position
  •  Smooth labor, deliver, and recovery
  • Overall health for baby

Thank-you.

4 Comments

Filed under Bone Marrow Transplant, New Baby