PICU Day 9 ~ (July 3, 2012)

What a day!!  It all started in the wee hours of the morning as Noelle's peripheral IV came out and a new one had to be inserted.  The process took some time since she is a difficult stick, but they were able to obtain it in one try this time with a location on her head.  I have mixed emotions about the head IVs since I hate the location; but they usually last longer than the feet or hands, and she cannot rub it, pull it, kick it, swat it {you get the picture....she has lost more than one IV in these manners}.  I was happy she was stuck only once; but that was short lived when a few hours later, they discovered her head was bleeding out from the IV site.  Then began the long and tedious attempt for another IV insertion.  We have been through this process multiple times this week beginning in the ER on day one, when it took seven attempts to place the first IV.  Peripheral IVs last only so long and when they do not flush or they simply come out, another one must be placed; and because Noelle is such a difficult stick {due to so many IVs in the past as well as her small size}, this can mean multiple sticks before success is reached.  Counting the IV attempts, blood draws, heel sticks, and  toe sticks, I calculated that she has been stuck more than 50 times this past week; and by today, I decided that something better must be done and made my wishes clear to the medical staff {as graciously as possible, but with urgency and concerned, watery eyes}.  I know it is a necessary evil which we have endured probably a few hundred times through the last seven months {and that is not an exaggeration}, but she can only tolerate so much; and since our request for a PICC line was refused a few days ago, I found it ironic that it was brought up by the staff today as a solution to the problem of constantly sticking her.  {I will say that we have been very happy with her overall care this time around; but an extremely high standard was set at FMC, and our expectations are thus very high as well}.  One thing quickly led to another at this point, and when they informed me of some medication changes while rounding on Noelle a short while later, I started questioning the direction of her care plan.  Thankfully, the cardiologist was nearby, and they quickly called him over to explain their current decisions.  I believe a misunderstanding had taken place since we had never intended to halt the original care plan while seeking a second opinion from Boston, but that was the impression given.  So after a short discussion, we were told that Noelle's original procedure spot for today had opened up again, and we could proceed with the heart catheterization according to our original schedule, if we so desired.  We had hoped to hear from Boston just for confirmation, but Tom and I discussed it and felt strongly that we should not delay any further but proceed for the sake of Noelle's health and the need for a confirmed care plan.  Things again progressed quickly from this point and after enjoying some sweet smiles and snuggles with Noelle, the cardiologist arrived to discuss the procedure and sign the paperwork.  Just as he was arriving, the specialist from Boston called and confirmed that he felt the care plan was what they would do themselves and that the heart catheterization was the next move they would also take, but he did not see anything pressing that made him feel a transfer was necessary for them to do at this time.  We were especially thankful to God for this affirmation of our decision and proceeded with the cardiologist through the next steps.  It is daunting to listen to and discuss the process of such a procedure along with the possible risks and side effects, and it makes us even more thankful that Noelle ultimately never rests in the hands of her current medical team but in our great God who loves her even more than we do.  Not long afterwards, she was being wheeled away; and I was very grateful for some dear friends from our church who came to sit and visit with us as we waited.  They dropped everything they were doing and rushed to the hospital to be with us during a time that would otherwise have seemed to drag on continuously.  The procedure took some time, and they experienced some issues with her ventilation process that they did not expect and actually had not seen in other patients; but she still did well overall, and everyone was ultimately very pleased with the final results.  They were able to obtain a baseline measurement of the pulmonary pressures and are happy to say that she is no longer the severe case that she was upon arrival last week, but she is now a moderate case {although they still consider this very serious in the realm of pulmonary hypertension, it does display good improvement, for which we are grateful}.  The best news of all was that though her heart anatomy was a-typical and not what they normally see, everything still originates in the right locations and is directed correctly {although it does not take the expected path~surprise, surprise!!} and is within normal range and obviously normal for Noelle.  This came as a huge relief after the multiple issues through this past week.

~Puffy from the procedure but very alert and wondering "Why do these people keep sticking all these tubes down my throat and nose?!!"~

Noelle finally arrived back in the PICU and though she slept deeply for some time, she has already started waking up and showing some signs of a very alert state.  Based on what we have seen so far, there is a strong possibility she will come off the ventilator tomorrow, and we can begin the rest of the therapy needed to start managing her pulmonary hypertension and hopefully avoid another serious setback such as this one.  One other main concern tonight is that they believe she has developed a blood clot in one leg, have started treatment necessary to manage it, and are closely monitoring it at this point.  We are pretty tired after such a long week and an especially long day, but we are also incredibly grateful to God for the answers that He provided today through this procedure.  While we are just beginning to understand the seriousness of her pulmonary hypertension and the long road it will be, things could have been much much worse; and God graciously spared us during this time.  My little joy tonight?  They were able place a central line while she was under anesthesia this afternoon, and so peripheral IVs and blood sticks are unnecessary for a few days until they place a longer lasting PICC line (I wish we could steal you for that, Keri Prybolo!! {Keri was one of our nurse practitioners at FMC, and she placed Noelle's very first PICC line with one try when she was still less than 15oz.!!}).  No one will estimate how much longer they think we will be in the hospital, but all evidence shared indicates that it will still take some time.  Regardless, we just rejoice in the huge blessings God gave us today and thank and praise Him for all He has done.  Your participation through encouragement and prayers means so much and continues to point back to the great God we serve.

NICU Day 46 (January 22nd)

NICU Day 45 (January 21st)

It was another really good day in the NICU with Noelle.  We are getting spoiled with so many good days in a row, but we hope it continues.  Noelle was doing so well on the cannula this morning that they finally quit switching her between that and the CPAP and just left her on the cannula.  So far, she has continued to do really well with it!!  We even got to hold her tonight for a little while and thoroughly enjoyed watching her tiny face (I wore a mask and gown as I have never developed any other symptoms than the pressure in my ears, but we wanted to play it safe).  She absolutely loves her pacifier!!  It fills her mouth, but it definitely quiets her down when she starts to get a little fussy.  She has definitely starting to build up muscle tone as well.  Tonight, as she lay on her tummy, she pushed herself up and completely turned her head from one side to the other.  It is incredible to watch such a tiny baby do something like that!!  They decided to leave the PICC line in for one more day so we are really hoping that it does come out tomorrow.  She will also receive an echocardiogram tomorrow to double check the function of her heart since they stopped her heart medication today.  Other than that, we are just enjoying these good days with her and watching her grow.  God has been so gracious to us, and we thank Him for another day of Noelle's little life.

NICU Day 43 (January 19th)

We are so excited to be reaching new milestones with Noelle.  Today she was extubated and graduated to the CPAP machine!!!  They were not planning on doing it quite this soon (they were going to give her a little more time to grow), but her tube had a leak and needed to be changed so they decided to go ahead and switch her over and see how she does.  So far, she has done extremely well and has already been weaned on her settings twice.  They have warned us that this could be temporary.  She could get tired and worn out from breathing on her own after a period of time and may have to go back on the ventilator and grow some more.  We are trying to mentally prepare ourselves for this, but right now we are just rejoicing at her progress!!  It is so fun to see her tiny little mouth, and now we will be able to hear her tiny little cry.  Whoever thought that a cry would be such sweet music to one's ears?!!  Noelle's other milestone was gaining 10 more grams and more than doubling her birth weight.  They are hoping she will continue a steady gain of approximately 1/2 oz. (or 15 grams) per day.  Tomorrow should present yet another milestone as they plan on removing her PICC line.  We are so excited to see machines being moved away from her bedside and others being turned off.  She had a steady stream of nurses coming by this evening checking out her progress...she has quite the fan club (as they themselves put it), and many of them even call in and check on her during their days off.  We are so incredibly grateful for the care that she is receiving and thank God once again for placing us where He did during this time.  It is also encouraging to us to share with the nurses that so many people are praying for Noelle and have them be excited about that and acknowledge how powerful prayer is.  We're praying that it gives us many opportunities to share Christ with all those we are encountering so thank you for being a part of that testimony and praying for us!!

NICU Day 42 (January 18th)

Noelle had another really good day, and it is so nice to be able to report that so many days in a row!!  There still was not much going on today although we are told that very soon the doctors will be setting larger goals for her to reach since she has been doing well for so many days.  She weighed in this morning at 710 grams so just 2 grams shy of doubling her birth weight!!  She will probably drop again and go back and forth for a bit, but it's nice to see that 700 number.  In other words, 1 lb. 9 oz.!  They are almost finished either weaning her meds or transferring them to oral meds so that her PICC line can be removed.  We are pretty excited for that to come out.  A huge praise is that the echocardiogram results came back to today and revealed that her heart is doing significantly better!!  They were able to cut her heart medication in half and will discontinue it by the end of the week.  It's amazing what a different baby she is from two weeks ago today.  Two weeks ago we were faced with the prospect of possibly losing her, and today she is almost fully recovered from that issue and beginning to tackle so many others.  God has been so gracious to us, and we thank and praise Him for how He has worked in her tiny body.  Our hope and prayer is that she starts steadily growing at this point and that she can exceed the goals that the doctors set for her each day.  I am still not visiting the hospital although this cold still hasn't really onset as of yet.  Hopefully it gets better before getting worse.  Thank you so much for praying for all of us as a family.  It is amazing to see the evidence of those prayers right before our eyes as we watch Noelle, and we truly appreciate it.

***HUGE Praise: the "cold" turned out to be simply allergies***

NICU Day 41 (January 17th)

Thankfully, there really is nothing new to report today.  The doctors are still working on switching her medications over so that we can get rid of the PICC line soon.  It will still be a few days as they will wait to see how she tolerates everything with the switch and then take the pic line out.  We are really looking forward to that--it means that much less that is attached to her and makes her much easier to hold!!  The same discussion is still going on as far as her ventilator as well so I imagine we will be seeing something happening with that by the end of this week.  She had an eye exam today which was good.  It showed that her eyes are immature as of yet, but that is to be expected since she is still so small.  Preemies eyes are prone to a lot of different things including blindness, so we are just thankful that she is doing well so far.  She did have testing done that showed early signs of Rickets due to the lack of nutrition when she was off her feeds for so long (they supplement what they can in the IV fluid but it doesn't always cut it).  They are giving her a supplement to help with this and hopefully counteract any further progression and reverse the level that she already has.  I believe we forgot to report that all of her blood work which they were testing genetically came back completely normal--no chromosomal issues at all.  It doesn't rule out all syndromes, but at this point it looks as if she was just extremely small.  We may have some answers for that as well as we just got the pathology report back on the placenta.  The doctors have ordered some blood work for me to determine if I have a blood disorder (I already have one), and this may have caused the issues with the placenta and thus the small growth for her.  We are praying that they get some answers from this as it could really help us avoid issues like this in future pregnancies.  Another prayer request is that it seems I am trying to fight a cold.  It is not full blown yet but seemed to get a little worse this afternoon and so I stayed home from the hospital tonight.  It's tough to stay away but it's the best thing I can do for her right now.  A cold or flu virus in her fragile body could turn all of these good days in the exact opposite direction so we are earnestly praying that she stays healthy during this time and doing our best not to expose her in any way.  We're so thankful to God for each day of life He has given to Noelle and especially grateful for this past week of good days.  We pray that it continues in that direction and that we can report another good day again tomorrow.

***Huge Praise: the cold turned out to be only allergies!***

NICU Day 40 (January 16th)

As I type "Day 40" I can hardly even believe it has been that many days since Noelle was born.  Really?  So much has happened during that time, it's almost unbelievable.  We are still almost 5 1/2 weeks out from her original due date and even at that, she was measuring only about the size of a 22-23 week baby when she was born one day shy of 29 weeks.  Her nurse practitioner said today, "I came and looked at her today and couldn't believe how much she'd grown, and then I was even shocked that I was thinking that about a baby that currently weighs only 630 grams!!"  She did lose some weight and is down to about 1 lb. 6 oz. currently.  This is normal, but we are hoping that she starts packing on the ounces more quickly since she is starting to do so much better.  They weaned her off the nitric oxide completely today and are discussing moving her medications over to oral ones so that we can also get rid of her PICC line soon.  It's nice to see machines and lines disappear from her bedside!!  The big discussion is now is when to take her off the ventilator and try her on the CPAP machine.  We are excited for them to do it soon and yet at the same time do not want them to rush it if she isn't ready.  It looks as if it may happen this week though since she is on the lowest settings on her ventilator, and they can't wean her any more.  It looks like they will have to give her a little mask when they move to the CPAP because the smallest nose prong tube is still too big for her little nose!!  All in all, it still was a "boring" day, and we are so thankful to God for that.  Thank you for rejoicing and continually praying with us!!

NICU Day 16 (December 23rd)

It was another really good day in the NICU with Noelle.  The doctor said today that he was "proud of Noelle and her progress."  He talked about how a couple of weeks ago when she was born that the prognosis looked pretty grim but explained that this is why they take each baby as an individual case and care for them accordingly.  We are so thankful to God for the care that she is receiving--it's an incredible team of people, and we cannot thank Him enough for how He orchestrated events to place us exactly where He wanted us to be during this time.  Noelle lost 20 grams which puts her at 420 grams / 14.8 ounces.  It's still showing improvement since this has been typical with her the last week, but overall she is still creeping up in weight, so that is a good sign. She is still tolerating her feeds well, even with the increases every 12 hours, so that is a praise as well.  Overall, today was a pretty quiet day for her--she rested most of the day and spent a short time with her eyes open and responding to us as we talked with her.  She did manage to pull her feeding tube out--she is forever grabbing things and pulling them off, so they have to keep a close eye on her, and it is yet another reason she has "feisty" written as a description in her chart.  It makes us wonder what we are in for with her, but it looks as if it will be anything but dull!!  They did have to put a PICC line into her arm today as the lines running through her umbilical cord had to be pulled out (they only last for about 2 weeks before the body starts closing off that area).  We did not stay and watch, but we spoke with her nurse this evening who told us that it went extremely well, and they were able to get it on the first try (a HUGE answer to prayer...especially since she is so small).  She tolerated the procedure very well and was already sound asleep when we called to check on her.  We know we still have to take it one day at a time and they expect her to still hit "bad" days and have set backs, but we are incredibly grateful to God for each day that passes and especially for the improvement and growth we continue to see in her.  He is teaching us so much right now--it is amazing how He can use such a tiny little person to change our lives so drastically.  Thank you for your constant prayers for us--it carries us through so many days.  We cannot say "thank you" enough...