A Great Weekend!

Cailin made it through the weekend on her cannula! In fact, she seems to be doing better on it then she had been doing on the ventilator...and certainly seems happier than she was with that awful-looking CPAP.

More great news - she has started gaining weight again. You may recall she lost a lot of fluid last week from the meds they gave her so she was back to around 2 lbs. But, over the weekend, she gained a little over an ounce. Not significant weight (and she does need significant weight gain) but it shows that even though she is definitely working harder on the cannula, she is still able to gain!

I included 2 pics below. The bottom one is from the day she was on the CPAP...not a flattering picture but for informational purposes :) And the top photo was taken from my phone. Not the best resolution but it does show her pretty little face without that awful tube down her throat!

Thank you again for all your continued thoughts and prayers...they seem to be working!!!

Continued Progress!

As Lauren reported in her post on Thursday, we were overjoyed when Caili extubated herself and then got switched to CPAP. Seeing her on Thursday was awesome--it was so great to see her free of the big ventilator, and without the tube in her mouth. However, she didn't seem to be loving the CPAP. Lauren was convinced she seemed scared, and I'm inclined to trust her mother's intuition. The CPAP is a bit scary--it consists of a big mask that covered her whole nose, and because she's so small it was right against the corner of her eyes--it took her awhile before she was brave enough to open them again. And it is strapped to her head complete with a big (and not too attractive) head-gear. Anyway, despite seeming a little fearful, she was doing pretty well, and we were hopeful that she'd be able to remain on CPAP, our hope being that in a week or so they'd try progressing her to the next even more mild ventilation option.

On Friday morning, less than 36 hours after they put her on CPAP, they decided that she was doing so well she was ready for that next step, and they moved her to something called high flow nasal cannula, which is a small clear line with two nasal prongs. It's like what they frequently use on adults, except that they push a lot more air, and the air is humidified so as not to dry out her nose. This step forward was a total surprise, and obviously we were, and are, over the moon. She looks so much happier and better, and she's just doing great! We'll try to get new pictures up soon. We are blown away by her progress, and in truth, the doctors even seem to be surprised.


She worried us a bit last night with a higher than normal heart rate and some oxygen saturation (the level of oxygen in her blood) issues, but that was unsurprising given the incredible stress of her room, as it was a nurse short, and the babies all seemed to be having issues at once. The stress that can build in a NICU room is unlike anything I've ever experienced--it's hard to put into words--it takes on a liquid form, and begins to make me feel like I might drown in it. Lauren thinks Caili can sense the stress, and I think she's right--last night sure seems like proof. Fortunately, once Caili finally fell asleep, she had a great night and continued to do incredibly well today.

I got to hold her again this afternoon--and she slept on my chest for what seemed like hours. It was amazing. She's now gone nearly 3 days off the ventilator, and seems to be holding up very well. However, they tell us that babies as small as Cailin sometimes do well for up to a week and then simply run out of energy. After all, she wasn't meant to breathe on her own for another 9 weeks. We're hoping Caili has the strength to keep going, but regardless we're grateful for this respite from the pounding force of mechanical ventilation on her fragile little lungs, no matter how long it lasts.

The big thing that we now have to focus on is growth / weight gain. The stresses of the week caused her to drop back below 2 pounds as of Thursday night, but they weighed her this morning at almost exactly 2 pounds--so she's definitely back on the growing track! And it should be pointed out that she doesn't have all the ventilation tubes weighing her down anymore, which may account for some of the weight loss! Hopefully she'll stay healthy and keep getting bigger and stronger!

One final note--it's strange how the NICU becomes your family, and your heart breaks for your baby's neighbor's pain, and rejoices in their good news--these people that not so long ago were simply pregnant strangers, but are now sharing with you the horrific experience of watching your children fight for their lives, with no control and little ability to help them. One of Caili's neighbors in particular is at a critical stage, so, if you can add little Christopher to your prayers, we would appreciate it.

As always, thank you for your thoughts and prayers, for Caili and for Caili's roommates.

Extubation!

Caili has continued to do well--so well the doctors had been talking this week about the possibility of extubating (removing the ventilation tube currently down her throat) her today or tomorrow and instead using a more mild form of ventilation, called CPAP. A CPAP uses prongs in her nose to provide ventilation support, rather than a tube down her throat. While it is still a form of ventilation, it's less invasive, more comfortable for Cailin, and bears less of a risk of infection. However, with the CPAP, Cailin will have to work harder to breathe as this modaility of ventilation only supports her as she breathes. It doesn't provide any breaths for her like the typical method of intubation. So, bottom line is that with a CPAP, Cailin must initiate each of her breaths on her own. Once she does breathe, the CPAP provides her with some extra support, but the majority of the effort is hers...a big step for our little Caili.

In addition to the progress with her lungs, she has also been telling us she feels better in other ways. Over the last few days, Cailin seems to have become a lot "fiestier". She's been awake alot more, looking around, communicating with the nurses (and warming alot of hearts I might add) and grabbing onto anything she can --our fingers, a rolled up gauze pad her nurses made for her, the tape holding her intubation tube and...the tube itself.

Well, maybe you see where this is going...last night Caili decided she didn't want to wait any longer for her CPAP and she took matters into her own hands and extubated herself. Since the doctors had been discussing the possibility of moving to CPAP anyway, they figured they would give it a try. And, we are thrilled to report as of 7AM this morning...it's working!

Again, Cailin has alot of work ahead of her and the doctors say that the next 48 hours will show whether she can handle it. It's great news that she has made it this far but they warn us that little ones some times start out OK but then get tired...

Please keep little Cailin in your thoughts today as she pushes through this next hurdle.

Daddy's Turn!

It's been a good week! Cailin has continued to gradually improve, and we've continued to get to interact with her more. Lauren got to hold for the second time on Friday--this time for an hour. What joy! Sadly, I was working and missed it, but Grandmom (Lauren's Mom) was there for the big event. Cailin loved every minute of it, and even got to be fed while in Mommy's arms (through a tube but she still seemed to enjoy it). And the good news for me was that I had agreed to a 2 to 1 ratio of holding her (Mom's need priority), so that meant I was next!

On Friday night they continued to move the ventilation settings down gradually, but this time they reached a challenging point for little Caili. She started to struggle just a little more. She made it through Saturday with nearly continuous "comfort holds"--which is just a light, steady touch on her head and rump.

On Sunday morning Caili was struggling a bit more. They actually had to move back to Friday's ventilator settings--not an ideal step, but a necessary one. That, in conjunction with several other changes, allowed Caili's day to improve significantly. And it got better.

Midday yesterday, her nurse took down her "TPN," the IV fluid that's been providing her nutrition. Her feeding is going so well that they were able to stop her IV fluids, meaning that she's now getting basically all of her sustenance from breast milk! They may give her some vitamins from time to time, but otherwise she'll be digesting all her food. This also means she's getting all those anti-bodies from the breast milk, which is incredibly valuable as her immune system still isn't terribly strong. Lauren and I were thrilled with this news.

There was a thought I might get to hold her yesterday, but since she'd had a bad morning, my suspicion was that holding her was off the table. To my delight, her nurse said that she had recovered so well that holding her would be just fine. So, at roughly 4:15 yesterday afternoon, my daughter was placed in my arms for the very first time:

I can't begin to describe the joy of holding her. I was scared as they were preparing her--it's a bit daunting to watch them re-route all the tubes and lines--but the fear evaporated the moment she was in my arms. It took her a little bit to warm up to me, but after a couple of minutes, her stats began to improve, and soon she was sound asleep.

I held her for nearly an hour, and it was time for her feeding and "care," which is when they change her diaper, take her temperature, etc. The nurse decided to take her temperature while I held her, and it was normal, which was great--were she cold I'd definitely have to stop. The nurse suggested that she feed Caili while I held her. Caili seemed to love that. And I continued to hold her after her feeding was done. The rest of her care could wait.

After over 90 minutes of holding her, the nurse suggested that Lauren take a turn. Much as I was loving it, I couldn't deprive Lauren of that joy, so I carefully handed her to the nurse, who then put her in Lauren's arms. Lauren continued to hold her for close to another hour, and of course Caili loved every minute of it. Caili had to go back in her isolette just before 7, as the nurses change shifts at 7, and parents have to leave the NICU. In total, Caili was in our arms for more than 2 and a half hours.

What a day!

Finally!

After several days of stability (and a fair amount of begging), we were given the OK to hold Cailin tonight! Unfortunately, since she still can't maintain her own body heat, she could only be outside of her isolette for 30 minutes or so. And, since it is quite an ordeal, they only allowed one of us to hold her for that 30 minutes. Lucky for me, Tim was insistent that I be the first.

Leading up to it, I admit I was a bit nervous. I think mostly nervous that she wouldn't like it and her vitals would go awry. Given that she has been fairing so well, I didn't want to rock the boat. But, I had been told by so many people that little ones like Cailin tend to love it and I was certainly eager to try.

Once they lifted her tiny body up to get her ready to hand over to me, she was visibly unsettled. Her tiny little body was wiggling all over, arms and legs flailing about anxiously. She clearly was confused and not liking the disturbance. Within a second, the nurse had her out and placed her on my chest, skin to skin. It was amazing, she just stopped moving all together and settled right down. The nurse had me hold her with one hand under her bottom and the other supporting her legs and cupping her back. Words can't describe how wonderful it felt. Holding her tiny little warm body and feeling her so close to me was just incredible. I loved it and apparently so did she. Her vitals instantly stabilized and her oxygen saturation levels were far better than before they disturbed her. I talked quietly to her and just enjoyed every second of it.

Unfortunately, her ventilator tube seemed to be situated in such a way that it was "leaking air". So, I only got to hold her for 20 minutes instead of the planned 30. But thankfully, my fear for her safety overpowered my own sadness of having to let her go. They placed her back in her isolette and quickly fixed the issue with her tubing. All was back to normal. We helped the nurse get her comfortable and I have to say I felt a bit of incredible joy and also sadness. After 31 days of wanting so badly to hold her, 20 minutes was just not enough. But, as we say at least 10 times a day, one day at a time. The good news is that we both loved it and I'll look forward to the next time more than ever.


By the way, there has been much debate about whether Caili has red hair. While I don't love the enlarged version of myself, click on the picture to enlarge it and I think you'll see the answer to the question...

One Month Old

Taken on 10/14/07:

Cailin now weighs 2 pounds, 2 ounces! Some of that is fluid, but she's definitely growing, getting bigger and stronger. They're feeding 3 cc's every three hours now, and hopefully more tomorrow. Overall, our angel is definitely doing well!

Tonight was an exciting night, but I'll leave that part of the update to Lauren...

Feeds!

Cailin is now 4 weeks old (29 weeks "gestational age" as of tomorrow), and we're thrilled to report that she has continued to do well since her last excruciating low on Friday the 5th. Her ventilator settings have been slowly creeping down--perhaps a bit slower than Dad would find ideal, but progress is good no matter how slow.

And the best news is that she's been stable enough that they gave her approval to be fed yesterday! They feed her through a tube to her stomach, and they're only feeding 1 cc at a time--just enough to "prime" her digestive system. They started at 1 cc every six hours, but the nurse just let us know that they're already moving to 1 every three hours! Before they had to stop her feedings several weeks ago, she was getting 2 cc's every 3 hours, and if all goes well she'll be back to that level soon.

And that's not all the good news; the doctor that takes over next week (they rotate the lead /attending doctor at the NICU every two weeks) is our friend that initially got Lauren into see the high risk pregnancy doctors at Jefferson. It so happens that he's a big believer in kangaroo care, so we're both very hopeful that Cailin will remain stable, and if so, we should be holding her very soon! We both can't wait--I think I'm actually more excited for Lauren to hold her than I am to hold her myself. They already have such an amazing bond, which of course isn't surprising. Cailin lights up in her little isolette the second she hears Lauren's voice. I'm quite certain she'll be ecstatic to be held by her mommy!


And we got even more good news this week; they've been monitoring a hormone level in Lauren's blood which relates to her pregnancy complication. It needs to return to normal in the next several months, and it was down by 50% again this week. We met with one of Lauren's doctors yesterday, and he was thrilled at her progress, and also gave her the all-clear to resume normal activity, which means she'll probably start biking down to see Caili each day.

There was a little bad news this week--Cailin's central line came out, and on Thursday she had her second surgery to put it back in. Fortunately the surgery went well, and hopefully this time the line is in to stay until they want it out. But given the previous week, this was minor. If every week could go this smoothly, we'd be thrilled!

We hope you are all well. Thank you all for your continued prayers and words of encouragement. We can't tell you how much we appreciate all of you.

Forward Progress Again

Last week continued with much of the same, a little forward and a little backward progress. And although we are writing this post with good news to report, it was a really rough couple of days.

Early Friday AM, Caili had her first surgery to insert a central line — a catheter that gets inserted into a major vein in her neck to provide doctors and nurses with a more stable way to give meds and draw blood. Unfortunately, it is a necessary evil because a typical IV line often won’t last in babies her size. Her veins are just too small and can easily collapse.

The surgery had to be delayed slightly because Caili’s oxygen level began to drop lower than is ideal. This was the first sign of what was to come. They were able to perform the procedure, and it seemed to go well. But a few hours later, Caili began to falter again. She was at the highest settings possible for the ventilator she was on yet she wasn’t getting enough of what she needed. The doctors tried switching her back to that vent we described in our last post (the one she had rejected twice in the past) to see if they could make it work for her. But, as we all suspected, that didn’t work.

By the early afternoon, the doctors were very concerned and of course we were panicked. But, after several excruciating hours, the doctors seemed to have figured out that this episode was not too different from a previous episode, where the solution was to give her more fluids and blood. They weren’t sure it would work since things seemed to have been more severe than the prior episode. Yet they seemed to be out of options. But thank God, it appears that it did work. Since Friday night, she has been steadily improving. She has tolerated several reductions in various ventilator settings and is again heading in the right direction!

As for Tim and me, we’re doing as well as can be expected. I will say one thing though, we seem to be learning to cope and accept the good days (relatively speaking) when we get them. When you experience a day like Friday, a day like the past three seem like days to celebrate, enjoy friends and family and even laugh when we can. We have quickly come to realize that Cailin has us wrapped around her tiny little fingers.

I know you’re wondering because it’s certainly a logical question…where do we go from here. Well, we need her to continue to remain stable enough to allow her lungs to heal, grow and tolerate even lower ventilator settings. If she can stay stable for a week (or maybe less) the doctors will feel comfortable re-starting her feeds. Along with the feeds, another week of stability might allow us to do “Kangaroo Care,” which means allowing Tim or me to hold her against our skin. We can’t wait…because as of this post, neither one of us has had the chance to hold her.

Thank you again for your continued support and prayers and let’s hope our next update has continued forward progress to report.

The Ride Continues

So much has transpired since my last post, and yet virtually no progress has been made. Frustration seems to be the name of the game at the NICU. Parental will simply has no impact on the ability of our tiny little babies to get well, to grow, to breath.

Cailin's status hasn't changed much, but to get to this point has been more trying that I could possibly explain to anyone that hasn't had a child in the NICU. I last posted on Friday night. Saturday was a good day, followed by another rough night. Sunday was amazing--oxygen levels down, vent pressures down, discussion of possible feeds the next day. Happy parents, hopeful parents. Parents of a child that was back on the path out of the NICU. In truth, parents that still hadn't learned what giving birth to a "24 weeker" really means.

Monday the trouble began anew. Her lungs simply stopped working as well as they had been. All the progress on oxygen levels and vent pressures was lost, and then a lot more. We were walking backwards. By our visit last night things were a little better--she was stable at least.

And that continued until this morning, when, at around 9:30 AM, Lauren got our first call from the doctor--previously we had called the NICU for status many times, but they had never felt the need to call us. This call brought bad news; Caili had taken a turn for the worse, and despite their efforts she wasn't improving. The doctor--an incredibly kind woman that happens to be a member of the church at which Lauren and I were married and still attend--was "concerned."

I left work, picked up Lauren and her Mom (who thankfully had already been on her way when Lauren got the call) at home, and off we went to the NICU. I can't describe the sheer terror of the site that greeted our arrival; a team of doctors, nurses and a respiratory therapist gathered around Caili's isolette working frantically, looking concerned. Monitors flashing numbers that were too low, the incessant alarms silenced. I'm sorry for those of you that can relate.

We have been told that seemingly small problems can mean very big changes in our daughter, and we're just beginning to see how true that is. Because of this, doctors must react to a problem based on what evidence is available at that very moment. If they wait for test results, it may be too late. So, if Cailin is havng a significant issue that could be indicative of 3 different causes, they simply treat all 3 while they wait for the test results.

Before we had arrived this morning they had tried changing her ventilator--they moved her to an oscillator (likened to a VW engine by a friend whose son was on one too)--and for the second time Caili didn't like it. Back to the jet ventilator. They then began to treat what they thought might be pulmonary hypertension. And they gave her blood--a tiny amount, but she has so little, and she simply can't replace all that they take for the many tests they must do. And they made other changes; stopping medications, starting new ones.

The net effect was that she stabilized within 30 minutes of our arrival--thank goodness. She continued to be stable, although the ventilator is still not doing what it needs to do. Setting the jet is much more an art than a science. They change the settings, test her blood gas, and change them some more. Hopefully the changes they made before visiting hours ended at 10 tonight will have the desired effect, and we'll awake to good news. If they can just get her stable, they can start feeding her again. At first it won't be for sustenance, but more to "prime" her underdeveloped digestive system--for now nutrition comes by way of an IV. But when she can tolerate a steady increase in feeding and they get to a point where it becomes sustenance, it will be invaluable to her ongoing growth and development.

For those of you that read this far into this long post, I should note that the other parents in the NICU, the doctors, and our friends that have been through this all say the same thing; that while Caili's path through the NICU will be unique as it is for every child, it has thus far not been any better or worse than is expected. There is still every reason to be hopeful and optimistic despite the fact that there are undoubtedly many bumps in the road ahead.

As always, thank you for your thoughts and prayers, and for taking the time to read about Caili's progress.