The Bear in the Bathtub

~The Happy Bear Cub After a Nap~

A little she-bear cub has come to reside at the Aguiar residence lately.  I think she ate the little bird that used to coo so sweetly and softly, although I still hear that bird faintly every once in a great while.  This little cub growls all.the.time, but only when happy or extremely excited about something or just carrying on a simple conversation.  Unhappiness or urgent opinions are still expressed with fussing noises.  The cub is cute, so we have decided to keep her...as long as she lets the little bird come out and sing once in a while.  She made quite the mess this morning and needed a bath, so this is our happy little cub enjoying one of her favorite moments of the day.  Enjoy!!

Nine Months Old

~Sweet, 9 Month Old Baby Girl~

~Blurry, but My Favorite: Love these Smiles!!~

I can hardly believe this little girl is nine months old today!  There were many days when I was not sure we would ever make it this far; but by God's grace, we are enjoying this precious gift who is growing like a little weed.  She still did not quite average 1lb./month as she weighed 8lbs. 12oz. this week; but she is close, and everyone is quite pleased with her growth.  The last few weeks have been very full for us, not only with multiple doctor appointments but also with the weighty results and projected treatment of the sleep apnea and waiting on the doctors to consult and develop a plan.  We did not share many details earlier since we needed to process the news ourselves, and we also did not want to cause undue alarm if the proposed treatment was dismissed by the rest of her medical team.  However, it was and is still being seriously considered, and so we are facing the possibility of a tracheotomy to solve the sleep apnea issues.  This came as a complete shock to us since Noelle has been doing so well, and her doctors almost did not proceed with the sleep study originally.  I truly thought it would confirm some reflux issues but nothing more serious than that, and it took us a few days to wrap our heads around the information, once the ENT highly recommended it almost two weeks ago.  Thankfully, he still had to consult with Noelle's cardiologist and pulmonologist who were greatly concerned but not as extremely urgent about it since they had seen progress with her since her last hospital stay.  The last ten days were filled with much discussion among them, and we finally learned the new plan at Noelle's pulmonology appointment on Thursday.

~Snuggling with Gigi on the Porch Swing~

The medical team has decided to repeat the sleep study on October 17th; but if the results are the same, then they will proceed with the tracheotomy {or tracheostomy~the term is interchangeable}.  I will admit that I initially struggled with this issue more than I ever expected, especially considering how many life and death situations we have already come through in the past several months with Noelle.  However, after much wrestling with it, I realized that I had become quite attached to our new "normal" life, especially since I felt as if we could "see the light at the end of the tunnel" and hoped to be completely "normal" again by next summer {i.e.~oxygen free, fewer doctor appointments, fewer medications, fewer restrictions, etc...}.  The tracheotomy completely threatened {well, it totally dashed} any hope of that normality returning for many months...years even, since the ENT specialist had prepared us to have it inserted for a minimum of two to three years.  It also meant another very long hospital stay since we would be admitted for a minimum of one month for the surgery and the intense training we would receive to care for Noelle in her new condition.  The other ramifications are incredibly numerous for day to day life as well as long term development and plans, and they become overwhelming when we dwell on them; but in the end, God revealed my sin to me and reminded me once again that it is His plan that is is best for Noelle and our family, and I am not to become attached to my own dreams and plans.  If we truly desire for Him to be glorified, then we must live that in our daily walk, regardless of the painful circumstances we endure.  Now, I can truly say that we are at peace with whatever the results turn out to be next month.

~Grandma is my new Snuggle Buddy!!~

This does not mean that we do not have fears that must be surrendered or tears that easily flow, but it does mean that we know that the same God who gave life and breath to Noelle and brought her to today is also the same God who will sustain us through this next chapter, however it comes to be written.  In the meantime, we are doing everything humanly possible to help the situation in the form of controlling her reflux.  Noelle's medications has been nearly doubled {due to her weight gain}, and we are using and performing every other reflux aid we can possibly do.  We know that reflux can reflect as apnea episodes, so we are trying to eliminate these as much as possible so that we can get as much of an accurate reading as possible in a few weeks.  Thankfully, my mom has recently moved here and is a tremendous help during this time, especially as we work through these issues.  We truly appreciate your prayers in this matter.  Selfishly, we pray that it will not come to this while ultimately desiring that God's will be done in both Noelle's little life and our family's life as a whole.  We will certainly continue to update but will not have any further information on this issue until the end of October.  In the meantime, we continue to enjoy this sweet girl and her precious smiles each day as she grows and continues to change right before our eyes.  Happy Nine Month Birthday, Noelle!!!

~~~More pictures of life with Noelle the past few weeks~~~

~I am reaching for toys now!!~

~Sweet Snuggles with Grandma~

~What was THAT noise?!!~

~Visiting with Aunt Donna at the NICU~

~A Nap on Gigi's Porch Swing~

~What a life!!~

"She Looks Like A Science Experiment!!"

~What in the world did you do to me?!!!~

~Finally Asleep~

~Early Morning After A Restless Night~

~This really was not so fun, Mommy!!~

"She looks like a science experiment!" was the text I sent to Tom on the night of Noelle's sleep study at the hospital after the staff was finished gluing and taping sensors, wires, and tubes all over her head and face.  She tolerated it fairly well, although I did "chicken out" and allowed her to forgo wearing the helmet on top of all the various items attached to her.  Thankfully, we did not have to wait long to discover the results, but we were very surprised at what they discovered.  The pulmonologist called late the next day to tell us that Noelle had completely failed the sleep study, and they had determined that she had both obstructive and central sleep apnea.  They prefer that babies fall within a "normal" range of 1 to 10 episodes per hour, although even one episode gives them cause for concern.  Noelle averaged 39.7 episodes per hour, which has caused everyone to start jumping into action through this past week.  We were quickly scheduled to see an ENT specialist this week to determine if her adenoids and tonsils might be an issue, and everyone was hoping for an "easy fix."  However, babies this young usually do not have such issues, and Noelle (for once in her life) has fallen into that normal category with no tonsil or adenoid issues at this time.  Because of this, the treatment plan becomes much more complicated and drastic, and her medical team is currently discussing options and developing a new care plan for addressing this serious issue.  I will refrain from getting into details on the possible treatment since they are incredibly numerous and serious, but we are earnestly praying right now for God to intervene in a way that would allow us to avoid drastic or severe treatment of this issue and are hopeful that with time and growth, it may resolve itself.  The medical team is currently weighing all the pros and cons to her current issues (such as pulmonary hypertension and chronic lung disease) and determining whether or not we have that time to watch and wait or if they need to aggressively treat this as soon as possible.  In the meantime, we are waiting for answers and just enjoying each moment with our sweet girl who is filling out and looking more and more like a term baby each day.  She now weighs approximately 8lbs. 6oz., and the doctors are incredibly pleased with the growth she has demonstrated since her last hospital stay.  Thank you, as always, for your fervent and faithful prayers for our little girl.  We do not take them for granted and will continue to update on this situation as we receive information ourselves.  Below are some pictures from the last couple of weeks of sweet life with Noelle....

~Carrots!!  Pretty Bland..My Cannula Is Better!.~

~Adores Her Daddy~

~Sweet, Tiny Hands in Daddy's Big Hand~

~Loves to Look Out the Window~

~Daddy is Fascinating!!~

Baby Shane & Baby Kara News

I will provide a separate update on Noelle soon but wanted to give some praise and prayer information on both Shane and Kara (If you are new to this blog, you can read about these babies here).

~Baby Shane meeting his big brother & sister~

Baby Shane is now home!!  After a tedious recovery period from his surgery, he is finally doing well enough to be at home with his family.  Please continue to pray for Shane's continued health as well as his family as they go through many adjustments in the coming weeks during their move and transition to a new church, as well as life at home with a new baby who has just come through a difficult journey.  Thank you so much for your many prayers thus far, and we hope to continue to report great progress with little Shane!!

~Sweet Baby Kara~

Baby Kara is being readmitted to Baptist today in preparation for eye surgery tomorrow for her ROP (the same surgery which Noelle had done back in February).  They tried an injection treatment several weeks ago which seemed to work for some time, but her exam this week showed that things are worsening once again, and so action must be taken quickly.  Please pray for the procedure itself as well as the ventilation issues that will be involved.  Kara also suffers from chronic lung disease, so the ventilation is a concern, and the hope is that she will be able to wean off of it quickly after the procedure.  We will continue to update on her progress, or you can also follow her on the caring bridge page which her mother, Kim, updates: http://www.caringbridge.org/visit/karahuggins.

Update After Update...

This post will include updates on Baby Shane, Baby Kara, and our own Baby Noelle...


Baby Shane

~Baby Shane with no ventilator tubes!~

~Bright Eyed~

If you missed the original post, you can read about Shane here.  Scott shared this updated today: "Holding steady for now.  Extubated the other day, but failed w/o a cannula. Had trouble over the weekend detoxing, experiencing withdrawal from the pain meds {which we were told were 10x stronger than morphine}. Still can't hold him until the chest tube is out...may try clamping it tomorrow or the next day. Removal is contingent on him being able to sustain normal breathing for an extended period of time."  Please continue to pray for the Logan family as Scott started his new job this week a couple hours away from Philadelphia {where Shane is currently located}, and I am sure they have a lot of details to sort through, not only with Shane's situation but also with a new move across the state from their home in Reading.  If you would still like to help this family, donations can still be made through the website Standing with Shane to aid them with the daily expenses they are currently facing in this situation.  Most of all, thank you for your continued prayers!!


Baby Kara

~Kara & her nurse Sonya, as Kara leaves the hospital~

~Kara taking a bottle~

This sweet little miracle continues to amaze people with the strides she is taking each day.  If you missed the original post about her, you can read it here, and you can also catch up on her daily progress at her own Caring Bridge site, http://www.caringbridge.org/visit/karahuggins.  Kara now weighs just over 5lbs., is on only 25cc of oxygen, and was able to go home yesterday after 114 days in the NICU!!  

Please continue to pray for her and her parents {Kevin and Kim} as they adjust to life at home with Kara {and yet, without precious Kahlan} and still are uncertain what they will face down the road with Kara due to her original brain bleed.  So far, she is doing far better than anyone ever expected, and we thank God for this amazing miracle that continues to display His power and might to all that see and know of her. 

Baby Noelle

~This rice cereal is not bad...~

~...but I still like my fingers better!~

This little girl continues to keep me on my toes as we persist through multiple appointments and an overload of information!  I am constantly made more aware of the host of issues that so many children face and am ever grateful that God never gives us more than we can handle {or should I say, what HE can handle through us!}.  Noelle had a wonderful report after an echocardiogram and an appointment with her cardiologist on Monday.  The pulmonary hypertension is greatly reduced, and the function of her heart is much improved, to the point that her cardiologist does not have to repeat the echocardiogram or see her for three more months!!  This news was very encouraging to us since we take a lot of our cues from her medical team, and their urgency for her to be seen often tells us their level of concern {for there is never a lack, if it is necessary}.  She will still be on oxygen for quite some time since we will not even discuss weaning it until November {depending on how she is doing at that point}; but it has become a part of life for us, and I would truly rather she be on the oxygen than more medications to help her heart and lung issues.  Yesterday, she had a full check-up with her pediatrician, since we have created our own well-check schedule for Noelle on top of the constant monitoring she is already receiving, and she weighed 7lbs. 12.5oz. {and yes, we count every gram and half ounce!}.  I had expected her to pass 8lbs. by now, but because she is getting older  {even by her adjusted age of 5 1/2 months} we are uncertain as to how her growth rate will now happen.  Thankfully, everyone is looking at things over a long period, and she is doing pretty well by those standards.  We will just have a tiny girl on our hands for a very long time, and I am going to continue enjoying this very long baby stage and the small, newborn clothes.  Someday, I know I will wish she is this small again!!  In the meantime, Noelle is being allowed to try some "big girl" things such as sleeping through the night and eating rice cereal, both of which are going quite well.  I was actually a little disappointed at her lack of response to the rice cereal but should have expected it since she has had a variety of medications put into her mouth for months.  Hopefully, we will get some more animated reactions when she graduates to fruit and vegetables!  We are looking forward to getting through next week which includes appointments with her neonatologists and child developmental services {CDSA} along with a sleep study which will require an overnight stay in the hospital.  Our hope is that the results of this study will complete a picture for proper diagnosis of her many oxygen de-saturation episodes that happen while she is sleeping.  After all of that, it appears that we finally have a week free of appointments before they start again in September; and while the schedule truly does not bother us considering all we have been through, we are looking forward to the short break.  As always, thank you for sharing in our many joys and for continuing to pray for our little girl; and we look forward to sharing again how God continues to work in our lives.

Please Pray for Shane Curtis Logan...

***UPDATE 11:00PM EST:  This update was provided this afternoon by Lindsay Logan's sister, Jessica: baby Shane update(my brother Scott Logan & sister Lindsay Gray Logan): He's out of surgery! Went well!! Sending the lobe out to lab to check it out. Re-inflated his lung & it's holding! They are saying he should recover just fine & it's really good news! Thank you God! Surgeon reported: minimal blood loss, able to remove by scope, hoping to extubate tomorrow and start feeds again, and be released before the dr. returns from vacation in 10 days. Praising God for good report- anxious to see him!***  Thank you so much for praying!!!

***UPDATE 2:45PM EST: Shane is out of surgery, and the doctors determined it was successful!  He is currently recovering, so please continue to pray as he heals from the surgery and continues to work through this situation.  Another praise is that Scott received a call this morning, offering him a job as an associate pastor at a church in PA (a job for which he has been in the process of applying for quite some time).  Thank you for your continued prayers for Shane and for his family.***

~Shane getting ready to transfer~

~Shane on his birthday~

***Original Post: Shane Curtis Logan was born on July 18th, weighing 5lbs. 11oz. and reaching 19" long.  He is the third child of Scott Logan (a friend of mine from college) and his wife, Lindsay and has a sister and brother who are anxious to meet him.  Shane was born a few weeks early and quickly began demonstrating breathing issues and was admitted to the NICU at a hospital in Reading, PA.  Over the course of the next couple of days, he continued to decline, requiring more drastic measures to be taken in order to help his lungs, and he was placed on a ventilator and then later a chest tube was inserted.  Through the last few weeks, Scott and Lindsay have battled differences of opinion among their medical staff and have watched Shane be pushed in areas, only to have him fail and have chest tubes taken out and reinserted at various times along with other issues.  Last week, they discovered cysts on his lungs through a CT scan; and due to the nature of the issue and the dissatisfaction with the medical care Shane was receiving, he was transferred to St. Christopher's Hospital in Philadelphia.  There are many more details~so much happens in just one hour in the NICU sometimes, let alone a full day or night or a few weeks; but the critical point is that Shane has entered surgery this morning to remove a portion of his lung that has the cysts.  The doctors are hopeful that this will help solve his issues; but only time will tell how he will respond to this form of treatment.

Please pray earnestly for this sweet little baby who is fighting so hard for life.  Scott and Lindsay are full of tremendous faith and trust in God, but this does not make their days shorter or their nights easier as they ride the NICU roller coaster with their precious baby.  Please also pray for Shane's siblings, David and Piper, who are very young themselves and probably struggling in their own ways to understand the situation in which their family currently stands.

~Scott, Lindsay, David, and Piper Logan (a few months before Shane's arrival)~

If you would also like to help in another way, a website (Standing with Shane) has been set up for donations to help the Logan family during this time.  Thankfully, Shane's medical care is covered; but Scott has been out of work for several months, and multiple expenses arise during a situation like this, especially since they have had to travel away from home.  I will update with details as they become available, but thank you for your faithful prayers for this family who is endeavoring to be a shining light for Christ as they fight for life with their son.

Eight Months Old

~Sweet, 8 Month Old Girl~

Noelle turned 8 months old today, and the days seem to be over before they have even begun sometimes.  What a delight this tiny treasure is to us, and we thank God for each and every day with her.  The past few weeks have been very busy with follow up doctor appointments and various other life happenings; but amidst it all, this little girl continues to make good progress in her growth and weighed 7lbs. 11oz. at her appointment on Monday.  Again, I was hoping to reach the 8lb. mark by the time we came to this day; but she is very close, and I believe she will pass the 9lb. mark before her 9 month birthday and finally obtain {and then exceed} the average of 1lb./month.

~First Sunday at church as a family~

This past weekend was very special to us as Noelle's pulmonologist allowed us to venture out a bit more in the form of attending church on Sunday morning.  What an incredible joy it was for me to be able to participate in the service and hear the preaching of the Word along with the rest of the body of believers.  Months have passed since I have been able to attend due to our circumstances; and while online services and messages help tremendously, they do not quite compare with taking part in the service for yourself.  Tom was always willing to trade off with me, but with his commitments and the things I personally had to do to care for Noelle, we just could not make it work before now.  My heart was full; and the music, preaching, and fellowship were an incredible encouragement to my heart.  It was not without strict rules for us as parents {including, but not limited to: no nursery and absolutely no touching from others}; but while I was a little nervous about it, we were more excited than anything else to be able to attend for the first time as a family.  It means even more to us since we will be put on "lockdown" again in October and not allowed to take Noelle into public places again as we tread through the winter and spring months, attempting to avoid colds, pertussis, RSV, and flu viruses that could land us back in the hospital with potentially serious issues and major setbacks in her health and growth, since most anything she might catch would probably elevate her to a critical condition very quickly.  If we can make it through this upcoming season, the pulmonologist is very optimistic for our activities next summer.  However, we still must also clear some other major things with our cardiologist and are looking forward to our first follow up visit with him next week and hope to gain a care plan for how her pulmonary hypertension {PPHN} will be managed long term, now that we are home.  It takes quite the effort to coordinate a plan of attack for this little girl, and we continue to be amazed and thankful at the communication among all of the physicians, therapists, and other medical personnel that follow her.   Specifically, we ask prayer for her lungs as they continue to grow and heal.  This is not just a concern through the winter; but even now we have been unable to wean her any further on her oxygen, demonstrating that there is still much damage to overcome with both the chronic lung disease and the pulmonary hypertension combined.  Otherwise, she is clinically doing very well, and we praise God for her progress.  To celebrate her 8 month birthday, I am posting a few pictures from an album I created {which some of you have already seen} entitled, "A Series of Smiles."  This little girl smiles all the time and consequently generates many extra smiles from her mommy and daddy throughout the day.  Thank you for your continued prayers for our little miracle!!

~My Favorite!  I LOVE this smile!!~

~Happy Girl~

~Bright Eyes~

~"Huh?"~

~Squeals of delight!~

~LOVES to talk!!!~