28 weeks

Dear Avid followers,

Sorry for not posting yesterday. No need to worry, both babies are doing well. It was Mom and Dad who fell asleep before posting. There is no big news to report, which we are happy about! Yesterday Clara got another blood infusion and that really seemed to help her out today. By tomorrow, Clara and Wilson will each be up to 7cc of breast milk every 3 hours. We asked the doctor today how many cc's is the goal and, while there is some equation they use to figure it out, for Wilson it is 17. The feedings are a delicate balance of patience and persistence; they don't want to go too fast but, at the same time, it needs to be fast enough to help them gain weight.

Today they are 28 weeks old. It is interesting how the doctors talk about their age. They either say "day of life 13" or gestational age, 28 weeks. Once they are 40 weeks they are considered a "newborn". We think Wilson is starting to look more like a baby and less like a little hatchling. We will post a picture tomorrow along with the update on the heart and brain scans!

Stinky

This will be a short posting... Clara's and Wilson's feedings continue to increase. Clara is at 5cc and Wilson will be at 7cc by tomorrow morning. Friday will be another big day as both kids get another brain and heart scan. These are done just to make sure there are no changes. We do not anticipate a change but it is still nerve-wracking.

The big worry today was that Wilson might not get invited to anyone's birthday party - EVER. He  really smelled like dirty feet. His nurse (who is amazing) cleaned out his bed and gave him a bath (which means he was wiped down with a wet wipe of sorts). Turns out the oxygen monitor wrapped around his foot was causing the stench. Although Wilson did not like the bath and all the monitors being replaced, he does smell much better and has a chance of making some friends in the NICU

Chris's incision looks a lot better and we are hopeful it completely heals by July 6th. Morgan is learning to balance work, home and the hospital.

Thanks for the continued prayers, thoughts and positive vibes -we are confident they are working!!

Heavy Weights!

Deck of cards = size of preemie diaper!

The exciting news from today is Wilson now weighs a whopping 2 pounds and Clara is at 1 pound 11 ounces! Both are up from their birth weight! They have increased their feedings to 4 ccs of breast milk every 3 hours. If Wilson does well with this, they are going to up his to 5ccs! The doctors said feedings can be (usually are) up and down, they have to figure out just how much their little stomachs can tolerate without making them sick. While Dad had to go back to work today, Chris and Grandma got to Clara's and Wilson's diapers. They are so tiny!

A question we've asked over and over is what caused Chris's water to break? While doctors say nobody really knows what causes pre-term labor, they are fairly confident there was a low grade infection in Clara's amniotic sac. Our doctor believes this happens at the time of conception and when there is an infection it causes the sac to break. Chris was on antibiotics for a week after her water broke and her contractions resumed the day after the antibiotics ended. The doctors said an infection was the main thing that could cause Chris to go into labor. This theory continues to prove true as Clara was born with a very high white blood cell count (a sign of infection) and immediately placed on antibiotics. However, this is an infection that keeps on giving. Chris's incision from her c-section is infected which is typical in women whose water broke and did not go immediately into labor. The doctor drained her incision today and showed Judy how to care for it until her next appointment on July 6. Hopefully the combination of antibiotics and the drainage will allow her incision to heal quickly.

The Brady Bunch

This weekend both Clara and Wilson had several "Bradys." Bradycardia (referred to as a "Brady") is a somewhat common condition in preemies where their heartbeats and/or oxgen gets so low they have to be stimulated. It may be common to the nurses but it really freaks us out. In non-medical terms, they stop breathing, all of the alarms around their isolettes go off, and we lose control of our bowels.

Speaking of bowels, today's big news is that both the kids had good stool. Clara actually had a good enough bowel movement that it caused her to brady (yes, she literally pooped her heart out). As we move into increased feedings, the bowel movements are really important to monitor. Clara has bowel loops, so we were especially glad she was able to let some out. We can't believe we're even writing about this, much less proud about it, but such is life in the NICU.

After a "big" afternoon, Clara let is us know everything was still OK

Tomorrow Clara is having an echocardiogram to examine the flow between the upper chambers of her heart. All in all, both kids continue to do well. Wilson had an increase in his oxygen percentage (still around 28-30%) but the doctors aren't worried yet. Clara's white blood cell count is still high but they are getting lower with the help of antibiotics.

This weekend was probably harder on us in some ways than it was on the kids. Chris developed an infection in the incision from her c-section but the swelling has gone down since she started antibiotics. Morgan has to go back to work tomorrow and brought work to the hospital all weekend to try and get caught up from an unexpected week away from the office. It will be a hard change for both of us, but we recognize how fortunate we are to have the help of so many friends and family here in town.

Thanks again for your continued prayers. Wilson and Clara are now 9 days old and doing as well as we could hope for at this point. None of us would be doing so well without the love, support and prayers.

Three generations of McGarvey women celebrated with
Clara as she was held by her mom today 



The Times They Are A Changin'

Chris has been pumping since giving birth last week and enough of her milk is stored at the NICU that they told us to start freezing it at home. This is what it looked like when I just opened our freezer. Yep, you now know what's in the two bottles with the yellow caps. It certainly makes the Jager bomb less appealing.

The Hangover

We got Wilson out last night to party with (be held by) Mom and he got a little tuckered out. When you combine that with his visit from Rajon Rondo, the single season record holder for steals at the University of Kentucky, Wilson had a pretty big Friday. Today his oxygen is back up around 28% (still good) as he is experiencing what we will call his first Saturday morning hangover. 

Don't worry pal, we've all been there before!

All in all, Clara and Wilson continue to do well. They had some minor setbacks today (Wilson's increased oxygen, Clara remaining on antibiotics because of a high white blood cell count) and we will have to watch a few things (make sure Wilson doesn't need a higher oxygen flow and that Clara's kidneys recover from some of the medicines), but the doctors are guardedly optimistic . . . so we will be too. The doctors and nurses have explained that we have a steep hill to climb and we won't make vertical progress every day. We just have to keep our faith that everything will work out and hope the kids continue their forward progress.

In a crazy story from today, a woman came up from the ER and rang the call button to our pod in the NICU. She said "my water broke and I'm going into labor." Judging by the explosion on her pants she was telling the truth. The secretary at the door needed to send her to a delivery room in the hospital and, since we had been there most recently, we gave "the Water Girl" directions on how to get to the labor and delivery triage. It was a little surreal. Honestly, we will at some point have to write about a few of the people we've met and stories we've accumulated while spending the last three weeks in the hospital.

"Its Been One Week Since You Looked At Me"

It has been one week since we delivered barenaked babies (anyone our age will now begin singing that in their heads while those younger will google it and ask someone what a "CD" is). So far Clara and Wilson have fought hard, are doing well, and have broadened our ability to love in ways we couldn't imagine. While totally cliche, watching these little babies fight for their lives every minute has allowed us to reflect on what is really important in this world and will hopefully make us better people and parents when they come home.

This morning Wilson continued his progress and is receiving less oxygen flow (a good thing) than he was yesterday. Clara is still on a larger breathing tube but we have no doubt she will be jealous of her "little" brother's progress and catch up in no time. Below are pictures of the differences in the tubing through which they are receiving support. Clara's is the bigger tube on the left.

 

After receiving the good news last night about the brain scans, one of our friends asked us what their next milestones will be. There is no short answer, but the docs will do another brain scan in a week and continue to monitor their hearts and lungs. It is also important for Wilson and Clara to begin feeding and putting on weight. Both kids are accepting tiny doses of breast milk every three hours and have added weight (measured in grams) each of the last two days. This is a great trend but one that will have definite ups and downs.

Today was a rough day holding the kids. Wilson and Clara got so comfortable lying on mom, they forgot to keep breathing. This freaked us out enough we might skip the kangarooing tomorrow. The nurses assured us it was harder on us than it was on the kids, but it was still frightening.

Thanks for continuing to take an interest in our kids and keeping all of us in your prayers. This first week was tough and we would not have made it without everyone's love and support.

RONDO-RIFFIC!!!

We post about "the Kentucky Effect" and Rajon Rondo comes by the NICU to say "hi" to the kids. Seriously. We were out getting lunch and missed him, which of course means we are never leaving again. Ever.

Go Big Blue!

The "Kentucky Effect" and Reader Correction

We were transferred to Norton/Kosair hospital in an ambulance on June 7, 2011, and Chris stayed in five different rooms at the hospital before being discharged. Why are we telling you this? Because yesterday we received a package sent to Chris on June 17th that was "lost" in the hospital mail system. In the package were two of the cutest UK stuffed animals you've ever seen, so cute Mom and Chris cried when they saw them. Is it a coincidence four UK players got drafted (including Jorts!) and Clara and Wilson received good brain scans the same day the youngest McGarvey's got their first Kentucky paraphernalia? Or is it what Coach Cal has been calling the "Kentucky Effect?" I'm not saying the Big Blue has healing powers, but I am suggesting that getting home in time for Midnight Madness is probably on their radar.

READER CORRECTION!!!

Like NPR, the Clara and Wilson bloggers are willing to admit when they've made a mistake. It was suggested that saying my mom "stopped by" was misleading and didn't give readers the full picture of the six hours she was here with her grandbabies yesterday. Or the hours she has spent here every day and every night since Chris and the babies were hospitalized. Dad recommended we make this correction, so Dad, consider it done. Both our moms have been great and we could not do this without everyone's support.

Brain Scan Results Are In

We just talked to the doctor and Clara and Wilson are both doing very well and have minimal amounts of bleeding in their brains!!! Bleeding is graded on a scale of 1 - 4 (with 1 being the least severe). Clara has Grade 1 bleeding and Wilson might not have any bleeding! This article gives a great summary on IVH (Intraventricular Hemorrhage) bleeding and its symptoms. After reading it I think you'll understand why we've been so worried and why we cried when we found out it was only Grade 1 bleeding. Thank you again for your thoughts and prayers . . . they are working.

We had other good news today. Wilson is now being fed breast milk every three hours and Clara started her feedings today as well. She is only getting 1cc (1/5 tsp) every eight hours, but will be increased to the same amount Wilson is receiving if she tolerates it as well as he did. Obviously she doesn't like that Wilson is doing "better" than she is and we expect her to catch up any day. 

As with any good news in the NICU, there usually is some accompanying cause for concern. Clara's white blood cell count remains high and she is still on antibiotic. She is also having some kidney problems as a result of the medicine to prevent brain bleeding, but is still producing a normal amount of urine. Hopefully everything will even out. But Chris got to hold Clara again today and my Mom stopped by while Clara was out of the isolette. (Mom hasn't decided what her grandmother name should be yet, so please feel free to send us your suggestions)

Thanks again for all of your love and support. Clara and Wilson will be one week old tomorrow and that in and of itself is cause for celebration. We are by no means out of the woods - the docs constantly remind us that the NICU is "roller coaster" - but they've had a GREAT first week.

Take my breath away . . . .

Clara caught up to her brother and was taken down to 21 percent oxygen today (which is the same amount we breathe). There is still the likely chance one or both could end up back on the ventilators, but the fact they are on the minimum amount of oxygen and breathing on their own is a good sign. Both babies are on 2 liters of flow which is also great. We get the results of their first brain scans this evening so keep your fingers crossed.

We're off to see the Wizard

It feels a little like the Wizard of Oz when we're in the NICU: We have a long journey to get Wilson and Clara home and along the way we have to make sure they have courage, brains, and good hearts. I think they have already proven they have more courage than we do, so we can check that box. Today we received a more detailed report on the condition of their hearts. Both Wilson and Clara have PFO's, an opening between the upper chambers of their hearts, which is not uncommon for preemies. The doctors are optimistic their PFO's will close but will continue to monitor. Clara doesn't have a PDA, a more serious opening/hole in the heart, and doesn't have to have another scan for a few weeks. Wilson might have a slight PDA, but it is so small they can't be sure. The doctors will monitor it and hope it can be cured medicinally.

As for their brains, the big thing to look for right now is whether there is internal bleeding in their heads. We were supposed to have neurological scans today but they were pushed back until tomorrow. Brain bleeding is graded in preemies on a scale of one through four with one being the best and four being the worst (and possibly fatal). Hopefully we'll know something more tomorrow night and continue to pray for the best in the meantime.

Wilson also had to receive blood today to boost his hemoglobin count. This is not uncommon and both kids will probably have to have this infusion several times before they come home. However, in a moment only parents could be proud of, Wilson did take his first poop today. Mr. Hanky has nothing on our little man. Of course, what's good about this is he did not reject his first dose of breast milk and will be able to continue receiving small doses. We hope in 3-4 weeks he will be receiving all of his nutrition in this fashion. Below is picture of Wilson from today. Both he and Clara were taken out from under the UV lights and Wilson wanted to show off his tan!

The BIG news from today though is that Chris was able to hold Clara for almost an hour. This is Clara's first trip out of the isolette and she didn't disappoint. Described as "feisty" by all of her nurses, Clara got in Mom's arms and immediately calmed down. It won't be long before the first father/daughter dance and we hope she behaves as well.

Wilson and Clara continue fighting and have maintained a solid forward momentum. Thanks again to all of you for your prayers, food, love, encouragement and support. Without you this difficult journey would not be possible.

Summering at Norton's

This year we decided rather than summer at the Hamptons we'd get a nice little unit downtown in the city. Starting June 7, when Baby "B", our little girl, broke her amniotic sac, we were full time tenants in the ante-partum unit of Norton hospital.  We spent 10 days in a luxurious hospital room where I was showered with gifts and had several visitors. The morning of June 17th we were literally kicked out of our summer residence by an impatient little girl named Clara. She insisted on joining the party before we were ready. Clara Marie was born in less than 30 minutes. She was breech but that did not stop her from being delivered naturally . . . and I mean NATURALLY - no medicine! Then her brother, John Wilson, decided he would chill in the womb and throw a few contractions until the doctors decided it was too risky for him to be left alone. He was breech too. Thankfully he was not in a rush like his sister and was delivered via a c-section. Yep, I'm the "freak" who has both deliveries. In case you were wondering, I prefer the c-section during the delivery process but the recovery from the natural is a lot easier long term. After the delivery we were moved to the post-partum unit with much less space!

I was 26 weeks and 1 day into my pregnancy when Clara and Wilson were born. We are confident the 10 days they stayed in utero after my water broke significantly improved their chances!  They are now on day 4 of life and so far they are both doing very well. Wilson is doing better than Clara but that is not surprising since he weighed more at birth and his amniotic sac was fine. Both are breathing on nasal cannulas (which is the best possible breathing option) but we expect they will get tired and have to go on the ventilator at some point (although, Wilson has not been on a ventilator, which is unusual for a 26 weeker). The doctors have been very clear that this is a roller coaster ride; we will have good days and bad days. We'll take two steps forward and one step back. They will be in the NICU until at least September 22 - their due date, so we have a long road ahead of us!

Today was a good day. I got to go home from the hospital and Wilson started feeding. However, he is only 1/5 tsp. of breast milk every 8 hours! I got to hold him twice (they call this kangarooing) which was the highlight of my day. Clara is breathing really well and the hole in her heart that closes in most newborns at birth, is closed!!!! I will most likely get to hold Clara tomorrow. It is also amazing that we are already to getting to know their personalities! Every nurse who has Clara uses "feisty" to describe her. All of Wilson's nurses say he is loud when he wants something (did you know at 26 weeks they cry?! - I didn't) but overall he is a really "good boy".

Tomorrow is the first of many critical tests - they each get a brain scan. This scan will let us know how much bleeding is on their brain. They measure this in "grades". Grade 1 is minor and grade 4 can be fatal. We'll continue to update the blog so people who want information can stay up-to-date.

As you can tell from the tone of this post, we are in good spirits and have a lot of faith and hope this will all turn out okay. The unbelievable support for our friends, family, co-workers, church groups and even strangers helps us keep our spirits high. We have our down times too; this is the hardest thing we've ever been through - emotionally and physically. Spending 14 days lying in a hospital bed hoping every minute that two little people make it to see the next day really made me appreciate life. Thank you for enriching ours.

Until tomorrow - 

Chris and Morgan 
Here is a picture of Wilson's hand from today!