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.

PICU Day 17 ~ Full Update

Day 17 in the hospital showed more improvement and gave hope to coming home, but with the blood clot and the high CO2 issue hanging over our heads, we were not sure when it would truly happen.  Noelle tried to squeeze in some sleep amidst the breathing treatments, chest PT, regular feedings, assessments, and various other tests and procedures that seem to arise each day while here.  Her morning exam looked positive, but everyone seemed to be waiting on the blood gas results to be repeated that night as well as the ultrasound on her blood clot, scheduled for the next morning.  The CO2 issue was especially concerning to the medical team and had them puzzled, so we did not get our hopes too high at the prospect of leaving soon.  During the late afternoon, the ultrasound tech arrived to scan her leg, and we were pleasantly surprised to discover the time had been changed from the following morning, which meant we would have answers by early the next day.  At nearly the same time, we were informed that the blood gas had been rescheduled for the next morning and would be clustered with her 4:00a.m. labs.  We were very glad she would not be stuck an extra time and were thankful to finally have something clustered within her care plan but were slightly disappointed to wait for the blood gas results.

~Kim and little Kara~

Tom sweetly took full responsibility for Noelle's care through the evening as I met with a fellow NICU mom, Kim Huggins, for dinner (in the hospital...thankfully, they have Subway!!) and was able to visit one of her little daughters in the Baptist NICU.  We had met several weeks prior on a day when Tom and I had taken Noelle to see her Forsyth NICU family.  She recognized us from reading the blog, which the nurses had shared with her; and as we began to talk that day, a connection was made between two people who have shared some very similar and yet very different experiences through their NICU journies.  Kim and Kevin were expecting twin girls when Kim's water spontaneously broke at 25 weeks, and Kara and Kahlan were born.  Kahlan lived 18 precious, yet heart wrenching hours; and her identical twin, Kara, has bravely fought a difficult battle through the past several weeks in the NICU.  Since that initial meeting, I have followed Kara's progress through the Huggins' Caring Bridge page (http://www.caringbridge.org/visit/karahuggins) and thus was aware when this little family made the transition to Baptist for ROP issues (same as Noelle) and connected again with them when we visited Baptist for an appointment for Noelle and then later the same day were admitted into the hospital through the ED.

~Sweet little Kara~

The last few weeks, Kara and Noelle were on the same floor but in separate, locked down areas; so Kim and I kept up on each other and met a couple of times during our stay and spent time visiting.  Please pray for this sweet little family who, like us, desired children from God and have now lost one and are fighting hard with the other one.  Kara has surprised the doctors on multiple occasions with her progress, especially considering everything she has gone through; and yet, they are a long way from determining what issues they will truly face with her down the road.  At this time, she weighs nearly 4lbs.; and they are waiting for her to gain a few more ounces to determine if she will need a shunt surgery, after which they would like to return to Forsyth (like we did) and allow Kara to continue to grow until she is able to go home.  As I looked at tiny Kara, it reminded me so much of the days that we spent with Noelle as she lived in that little isolette.  Those days sometimes seem like a lifetime ago; but most days, it seems as if we are still right in the middle of our NICU journey ~ it has simply changed form.  But as Kim and I discussed, God continues to give us grace for each issue which we encounter with our precious girls; and we "simply" leave it in His hands and take it one day at a time.  I know Kevin, Kim, and Kara would be extremely grateful to have others praying for them as they walk through these difficult days; and we continue to truly appreciate your constant prayers for Noelle.