Friday, October 31, 2008

The boys' 1st Halloween!!

Top two pictures are Landon and bottom two are Logan

Happy 1st Halloween to my little men!! Landon and Logan were all dressed up as M&M's today and although I'm obviously biased, they were the cutest and most beautiful little M&M's I've ever seen!!! Our sweet and easygoing Logan seemed to really like his costume and stayed in it for most of the day. Our sensitive and stubborn Landon, on the other hand, of course got angry with his and kept trying to rip the "M" off so the nurses decided to take his off a little early. It's amazing how they have already developed such distinctive personalities at such a young and tender age. I think it's certainly safe to say that Landon will be our little troublemaker!!

Today was a relatively calm day for both of them. Landon had a routine follow-up head ultrasound done yesterday and the results we received today were encouraging; his Grade II bleed shows improvement and the blood is being reabsorbed by his body. The doctor said his next ultrasound probably won't be for another few weeks unless his weekly head measurement shows an abnormally large change. Logan's head measurement has been gradually increasing for the last week and while Steve and I are keeping a close eye on it, the doctors don't seem to be overly concerned yet. He will continue to get his weekly Monday ultrasounds as they monitor the fluid building on his brain but we probably won't have any definitive answers as to his long term prognosis for many weeks.

They are both doing ok with their breathing, although I would love to see them on lower vent settings. Their blood gases have just been average so they aren't being weaned down at all. On a positive note, they are both still on their feeds, which is obviously the most crucial factor in their growth at this juncture. Landon has packed on some serious pounds (ok, ounces) and is weighing in at a hefty 1 lb. 15 ozs!! I can't believe our big boy is already close to 2 pounds, I'm so proud of him. His big brother Logan is making a valiant effort at 1 lb. 9 ozs. but still has some serious catching up to do before I can stop worrying so much.

Today was the first of many holidays I'm going to spend with my little boys but I don't think any of them will be quite as special and unforgettable as this one.

Thursday, October 30, 2008

Backward Steps

I guess it's only appropriate to start off by saying WAY TO GO PHILLIES! My dear husband Steve, like the entire city of Philadelphia, has been waiting for this day for the past 25 years and it's nice to see him so happy. Landon and Logan really are our good luck charms, there's no doubt about that.

The last few days have been ok, but not great. Foremost, some encouraging news: Landon was finally taken off the oscillator and put back on the traditional ventilator. What a tremendous relief. Unfortunately, neither him nor his big brother have been doing very well with their breathing on the conventional vent for the past two days. They have been desatting alot and their blood gases have been poor (high CO2 levels) thus leading to their vent settings being turned up to higher levels. It appears they are much farther away than I initially hoped they were from being moved off the vent and onto the CPAP, which is more gentle on their delicate lungs.

Yet another development is that the doctors suspect Logan may have an infection and this may be contributing to, or compounding, his breathing problems. Blood cultures were taken this afternoon but the results cannot be finalized for another 72 hours. However, early treatment is crucial to reverse a preemie's symptoms so the doctors went ahead and started him on a few broad spectrum antiobiotics until they are able to determine if he indeed does have an infection, and if so, pinpoint exactly where the infection lies. The fear is that he will get so sick they will have to stop his feeds again, thus inhibiting his ability to gain the weight and strength he so desperately needs.

I suppose I shouldn't be too surprised at the latest turn of events given that the boys' relatively short stay in the NICU thus far has taught me that for every 1 step foward, they're going to take 3 steps backwards. I only wish the peace and relief I felt on those good days were enough to sustain me during those awful days when the backward steps are seemingly endless....

Tuesday, October 28, 2008

Logan's Weekly Head Ultrasound

Today was a relatively uneventful day, which is always a good thing in the NICU. We did get the results of Logan's weekly head ultrasound and while it's not great news, it's not necessarily bad news yet either. The fluid build-up in his brain (hydrocephalus) caused by his Grade IV bleed has increased from last week and so has his head measurement. However, it's not at a dangerous level yet so for the time being, they will just continue to monitor it with his weekly ultrasounds and if it continues to build up, the next step will be to perform a spinal tap. All we can do now, like so many other problems they may experience, is to just wait and see (and pray for the best).

On a brighter note, we found out that Logan is now back up to his birth weight of 1 lb. 7 ozs. and Landon has actually gained a good amount of weight and is up to 1 lb. 14 ozs.!! Logan, our little trooper, is still on his feeds and was bumped up to 2.9 mL every 3 hours. He is certainly enjoying his feedings as he had a great time pooping all over my finger the other day when I was changing his diaper!! I can honestly say I never thought I would be so happy to have my son poop on me but it's always a good sign when they are having bowel movements because it means their plumbing, so to speak, is working well!! Unfortunately, Landon continues to struggle with tolerating his feeds and they had to stop them overnight. They tried again late this afternoon so we're crossing our fingers for good news tomorrow morning.

Landon is still on the oscillating ventilator but the doctors are slowly weaning his settings and hoping to have him back on the regular vent within the next day or so. Logan was having a little bit of trouble with his breathing today and they had to push up his vent settings to compensate for it. I was really surprised because he's been doing so well with everything for the last week or two. Well, another day behind us, another minor obstacle overcome.
The top two pics are of Landon (he actually put his hands like that under this chin...soooo cute!) and the bottom one is our little Logan holding my finger.

Sunday, October 26, 2008

Re-starting Feeds & Kangaroo Care

Today was Logan and Landon's 3 week birthday and both of them had a great day! Their blood gases have been good and they are slowly being weaned down on their ventilator settings. I'm hoping that Landon will be back on the conventional vent and Logan will be moved to the CPAP soon. Their blood gas analyses are a measure of the oxygen, carbon dioxide and acid in their blood and are extremely important in assessing their lung function and ensuring they are bringing in oxygen and discarding carbon dioxide efficiently.

Another bit of good news is that they were able to restart Logan's gavage feeds again today (using a feeding tube). Prior to the PDA ligation surgery, Logan was tolerating the feeds very well and was on Day 7 of the feed schedule (which meant 4 ml's of breastmilk every 3 hours). Unfortunately, they now have to start all over on Day 1 (1.2 ml's every 3 hours) but will probably increase the amount of breastmilk he receives at a quicker rate. Landon hasn't been able to tolerate his feeds at all, apparently his belly just isn't ready yet and all we can do is keep trying. Prior to the feeds they are nourished through a mixture of IV fluids (sugar water, lipids, vitamins etc.) and this is usually enough to sustain them but not enough to ensure proper growth and much needed weight gain. They both lost weight in their first week of life but have surprisingly gained some of it back and are now both within 2 ozs. of their birth weights. I pray for that day to come when they finally fill out and their tiny bones and ribs aren't so pronounced.

Today was also an especially nice day for me as I got to do kangaroo care with Logan for the 3rd time!! What this means is that Logan (clad only in his little diaper) is taken out of his isolette with all his wires and vent tubes and placed upright on my naked chest, in between my breasts. His head is turned to the side so his cheek is resting comfortably on my skin so he can hear my heartbeat and he is covered with a few blankets to help keep him warm. Today I got to hold and sit with him for 2 hours!! It is without a doubt the best feeling in the entire world and I cherish and look forward to each and every minute we get to spend together like this. I've done kangaroo care with Landon once as well but his vitals have not been as stable as Logan so I haven't been able to hold him again. I added a few pics above: the top two are Logan and I and the bottom two are the only time I've been able to hold Landon.

This is about as good as it gets as far as a day in the NICU and I've learned on days like this to just relax, take it all in and enjoy my time with my boys. You never know what the next day is going to bring.

Saturday, October 25, 2008

The first weeks of life...

As expected, our experience thus far has been a horrible roller coaster of good and bad days filled with a myriad of emotions. The boys are now 2 weeks and 6 days old and it has undoubtedly been the worst few weeks of my entire life. Watching my precious little babies struggle for every breath they take has been indescribably heartwrenching. At the same time, it absolutely takes my breath away to witness their unbelievable strength and resiliance as my boys fight through every obstacle they face. It truly has renewed my faith in miracles.

Both boys have respiratory distress syndrome (this essentially means their lungs are too immature to breathe on their own) and are on the ventilator and in an isolette. They were temporarily upgraded to the CPAP (Continuous Positive Airway Pressure) a few times since their birth but usually only lasted 24-48 hours and had to be moved back to the ventilator as their respiratory drive just isn't mature enough. To briefly explain, the ventilator entails an endotracheal tube being inserted through their mouth and into their windpipe so air can be sent into their lungs. The doctors decide how many extra breaths the boys need to supplement their own natural ones, how much force or pressure each breath should deliver to open the air sacs and how much oxygen should be mixed in. While on the CPAP, they take all of their own breaths but a mixture of air and oxygen will flow into their lungs, under pressure using nasal prongs rather than an ET tube, and keep them from collapsing when they exhales. The ventilator is a double edged sword; while it's a life saving effort in that the boys could not survive without the assistance it provides, it is extremely harsh on their tiny lungs and can often lead to long term lung damage. The goal is to get them breathing on their own as much and as early as possible.

Our first bit of bad news came when they were just 9 days old. Logan was diagnosed with a moderate sized Grade IV brain bleed on his left side and a Grade III bleed on his right side while Landon was diagnosed with a small Grade II bleed. Brain bleeds (or IVH's; Intraventricular Hemorrhages) often occur in micro preemies because they have extremely immature brains thus causing their fragile blood vessles to rupture easily. IVH is classified using four grades of severity based on the amount and location of the bleeding; Grades I and II are the most common and many times will resolve themselves with minimal to no complications or long lasting effects. Grade III and IV bleeds (such as Logan's) are devastating and signify irreversible brain damage. It will be many months or even years until we know the extent of the damage but just the fact that he survived at all is a true testament to his will to live. Many babies with Grade IV brain bleeds succumb to the injury within hours or days when their organs begin to fail and their tiny bodies slowly shut down but our little fighter suffered through it silently, showing no outward signs or symptoms. He continues to amaze us every day.

Their next struggle would be with their PDA's (Patent Ductus Arteriosis), which is a small blood vessel connecting the pulmonary artery and the aorta that typically closes within a few days after birth. so the baby's blood circulation can be rerouted as needed. However, in many preemies the PDA remains open which can lead to an excess of blood being shunted into the lungs making breathing extremely difficult. It can also lead to complications such as pulmonary edema, chronic lung disease or congestive heart failure. Unfortunately neither Logan nor Landon's PDA closed on their own so they were both given two courses of Indocin, which is a medicine that has proven to be highly effective in rectifying this situation. We were so relieved to discover a few days later that the medication had indeed worked and both PDA's had closed. However, as we have come to learn all too well, a good day can all too often be followed by a horrible one. Unfortunately they both began to have some breathing problems shortly thereafter and an ultrasound discovered that against all odds, their PDA's had both re-opened. This meant that at the delicate age of just 18 days old, they would need PDA ligation surgery. Thankfully they both came through the surgery with flying colors and are doing relatively well with their recovery. Landon has been having some difficulty with his breathing and unfortunately was put on the oscillating (or high frequency) ventilator rather than the regular vent. The high frequency vent provides tiny quantities of air at rapid rates using lower peak pressures and keeps the lungs continuously inflated instead of delivering breaths at a higher pressure with normal patterns of inhalation and exhalation. Hopefully this is only a temporary setback and he'll be back on the traditional vent with his big brother in the next few days.

It astounds me that they have already known more adversity in their short 21 days than many come to know in an entire lifetime. My heart absolutely aches with pride and unimaginable love every time I look at them.

The birth of our miracle boys

Sunday October 5th started out like every other day for the past two weeks that I spent in the hospital since being admitted at 3 cm dilated and 100% effaced. My contractions were seemingly stabilized and the doctors were discussing the possibility of releasing me to home bedrest on Monday when I would be exactly 25 weeks along in the pregnancy. Around lunch time, the contractions began increasingly in frequency but were still atleast an hour apart so I wasn't alarmed at all. However, as the day progressed, so did the contractions and when 5:00 rolled around, I knew something was terribly wrong. The contractions were not only increasing in frequency but were becoming painful. The doctor finally insisted on checking my cervix and surprisingly I was still around 3 cm dilated but he moved me from the antepartum unit back to labor & delivery just to be on the safe side. Good thing he did because things went from bad to worse very quickly after that. By 7:00 I was in tears in the worst pain of my life and when the doctor checked me again I had progressed to 5 cm dilated and there was no stopping labor at this juncture. They immediately ordered an emergency c-section and our little angels were born shortly thereafter at 7:51 p.m. and 7:52 p.m.