"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!!!~

Cruising Speed

~Styling in my new helmet~

~Tiny Feet~

Although I would not trade one single day we have had with our sweet girl, the days we are now experiencing with her are ones that I wish I could bottle and keep forever.  Before now, the days were precious to us and yet often excruciating at the same time.  We have had many good days along our journey, even through the NICU and PICU at various times; but every gram/ounce was a struggle and ground was often lost in those days.  Even once we reached the point of consistent, daily weight gain, we still never touched the goal of a "normal" baby, gaining approximately an ounce per day; and one of the major things we discovered through this past PICU journey was that her heart was working so hard against the pulmonary hypertension, it was stealing all of her extra growing calories and using them to fight her increasing lung and heart problems.

~I just don't know how these things happen, Mom!~

Now that those issues are under control with continuing treatment in the forms of oxygen and medications, those calories can again be used for growth; and we are finally seeing the kind of weight gain we have been anticipating since she originally came home from the NICU, thus reaching "cruising speed."

~Someone has found their thumb!~

Yesterday at one of her appointments, she weighed 7lbs. 7 oz., and the newborn clothes are finally fitting well as she fills out.  Her developmental skills also seem to be increasing and changing daily, and the sweet smiles and little "words" are beginning to create a sense of true normalcy as we still navigate the multiple ramifications of her micro-preemie birth.

~Sitting up like a big girl~

A minor issue was also addressed this past week as the back of her head has been becoming increasingly more flat and creating pressure points, so she was fitted with a helmet that she will wear for the next four to six months.  It does not seem to bother her much at all, and our happy baby continues to thrive now that she is back home in her own surroundings.

~Playing with Daddy at the Dr. Appt.~

~With Grandpa Aguiar~

Along with her appointments, the past several days have been busy with various activities and also brought visits with several people, including her Grandpa Aguiar, who was excited to hold her for the first time.  We are incredibly grateful for the family and church family that God has given to us through the years and are so blessed by their love and support, especially through this past year.
Today, as we celebrated two years of marriage together, I thanked God for the man He has given to me to stand by my side as we walk through life.  These past two years have been filled with adventure, learning, trials, and much growing as God has used this covenant to change and mold us to become more like Him.  Through it all, Tom has been lovingly constant and faithful, and I have seen him grow and change by leaps and bounds and am so grateful for this man whom God has chosen to lead our family.  My heart is also undergoing a transformation, and it amazes me how God continues to reveal sin and change me through my spouse.  Noelle has added a completely new dimension to this life journey, making the past year feel as long as ten years at some points; but God has been faithful, and we are ever grateful for the manner in which He has chosen to glorify Himself through her tiny life.  We enjoyed some sweet reminiscing as we celebrated today; and as we treasure our many memories together, we look forward to how God will continue to work in and through our lives to make Himself known and glorified to this world.  Thank you for your continued prayers for our family as we seek to live out the covenant which we signed on that precious day, only two years ago:

Because God has ordained our love and prepared us for each other, we desire to become husband and wife.  Together we will be vessels for His service in accordance with His plan, so that in all areas of our life, Christ will have the preeminence.  Ever honoring God's guidance by His Spirit through His Word, we will live our lives first unto God, even above each other and all others.  Through the pressures of the present and uncertainties of the future, we promise to be faithful, to be loving, to honor and cherish, to strengthen and encourage, to help and to comfort, endeavoring by the grace of God to always reflect Christ's relationship with His bride, the church, for as long as we both shall live.

Growing On Up

~Incredibly Happy Girl~

While this first, full week home has been a time of adjustment, it has mostly been a time of joy and amazement as our tiny girl seems to be growing right before our eyes.  She weighed 6lbs. 7oz. at her doctor appointment on Monday, and I am excited to see the comparison when we go for her next weight check this coming Tuesday.

~Just so sweet~

~I LOVE to play!!~

Although I would have termed Noelle a happy and content baby before this last hospital stay, there is now a marked difference in her; and the smiles hardly seem to leave her face!  It seems that each day brings more activities, new discoveries, more "talking", and so much growing in both size and development.  It has made us realize how poorly she was probably feeling for quite some time~especially since one of the signs prior to her heart failure was that she was no longer smiling and talking; and she is doing those things so much more now than ever before.

~Aunt Donna dropped by for some snuggles~

Now, the difference is incredible, and many people have remarked how much change they can see in her pictures...imagine the difference we see in person!  This does not mean we are "out of the woods" by any means, but it does demonstrate the effectiveness of her treatment and current medications; and we are very thankful for the close follow-up care she is receiving from our medical team, as well as the continued advice and care from our FMC NICU family, who continues to follow her progress and makes suggestions and voices concerns and thoughts with her care.  It is comforting to have the support and advice from people whom we love and trust and who know our daughter's history even better than ourselves.  Knowing that they have held "mini-rounds" on Noelle with the blog information and multiple texts and phone calls, speaks volumes of their continued love and care for our precious girl.

~Milestone!!  I'm starting to push up consistently!!~

~"I love my new WubbaNub!!"~

Noelle celebrated her first week home by starting to push up (she had done it in the NICU a few times, but only when VERY upset about something being done to her),  getting a WubbaNub (a soothie pacifier with a beanie attached to help her hold it in her mouth--regular pacifiers still choke her), smiling all the time, playing uninterrupted, and sitting up in her Bumbo for the first time! 

~First time in the Bumbo...what a big girl we have now!!~

Bob Buckley with FOX 8 will be doing another update story which is set to air tomorrow night during the 10:00p.m. news.  As always, you can watch it livestream here, or the clip will be available online after the news airs.  We are continually amazed at the relationships that God continues to develop through this situation and are thankful for the wonderful job that Bob and his photographers, Eric and Ferlon, have done through these past months, portraying the story in a way that God receives the glory.  As always, thank you for continuing to pray and for sharing in our joys with our sweet girl.