Friday, August 29, 2008

A few more days in the NICU for baby Claire...

Well, Claire homecoming was delayed a few days today by her doctors. Her weight gain since being in room air in a regular crib hasn't been stellar and she needs just a little more work on having all of her feeds from a bottle so the doctors decided to keep her in the NICU for probably about another week. At that point, she and maybe even Elizabeth will be ready to come home. While we are thrilled at the thought of having the babies come home, we also want to be sure that they are physically ready to come home so a few more days at the NICU is best for now. We took Luke to see the babies today and he was so curious about them. He wanted to touch them so badly! Overall, he was pretty good and pretty well behaved. We'll see how he does once he sees Mommy holding the babies here at home!!!

We got good news today that not only is Elizabeth cold stressing and working on the transition to room air in a regular crib, but so is Kate! Both girls are doing very well so far with this new environment and look just adorable in their "big girl" clothes. Elizabeth has been doing better with her feeds and doesn't need oxygen quite as much. Kate has slowly been increasing her feed amounts and has been passing stool quite successfully the past few days. This is a good sign as it means that her bowels and intestines finally seem to have good motility which was a concern last week when she took a few steps backward in her progress. She is also very slowly attempting to wean down on her ventilator settings.

Baby John is doing very well also. He just crossed over the 4 lb. mark and is doing quite well with his feeds also. He's still smaller that the girls but he seems to be doing the best of all 4 when it comes to breathing. John isn't quite ready to cold stress in his bed yet, but the doctors are hoping to that he'll be ready someday soon!

That's all for now....we'll keep you updated!!!

Wednesday, August 27, 2008

Baby Claire comes home on Saturday!

Well, we got the good word late yesterday that Claire Renee will be coming home on Saturday! Claire has been cold stressing for two days and has been doing quite well at maintaining her regular body temperature. It's so funny to see her in all bundled up in clothes in a regular hospital crib instead of her isolette. We can't wait to start seeing our little miracles come home. We'll be sure to post some pictures asap! Continue to keep John, Elizabeth and Kate in your prayers. We're hoping that they won't be far behind!

Monday, August 25, 2008

SOME BIG NEWS..... I went to both hospitals today to see the babies (yep, Kate is still at Childrens...I'll tell you more about this later....) At AGH, I'm so happy to say that all three babies - John, Claire and Elizabeth - are all breathing completely on their own! Can you believe it?!?! On top of that, Claire and Elizabeth had had their feeding tubes removed and are doing all of their feeds from bottles! John is also eating from a bottle but still has at least a few feeds from the feeding line that goes to his stomach. Each of them is eating just over an ounce at each feeding and they have done very well teaching themselves to suck, swallow and breathe while they eat. It's absolutely amazing how well these babies are doing. They're not just surviving - they're thriving! Dr. Balest came in while I was feeding John and I said, "So when you do think that the first one will get to come?" Dr. Balest pulled out their charts and said, "well based on what I see, they're all an acceptable weight, they're all eating successfully from bottles, they're off all medications with the exception of vitamins. The last test will be to cold-stress them and remove them from the isolettes to regular newborn cribs. If we're successful with this and they're able to maintain their body temperature, I'd say that they'll probably start coming home NEXT WEEK".

Excuse me....WHAT?!?!?!?!?!?!

Yep - that's right. She said that they are going to potentially start sending the babies home next week. I have to say that my heart jumped up into my throat! I couldn't believe it! Our babies will finally start to come home. How incredibly exciting! I have to admit though, I'm pretty nervous too. Beginning to care for four premature children is a rather intimidating task and the anticipation has been building for so long now that I can't believe it's finally here. Dr. Balest said that Claire will probably be first, then probably Elizabeth just a few days after Claire and John won't be far behind! Of cousre, my mind is working overtime tonight with all of the things I need to do before the babies get here and my list is growing with every waking moment. I'll keep you all updated on how things go the rest of this week and when we think that Princess Claire, Queen Elizabeth and John - aka "Q Dog" to his Dad and I :) - will bust out of the NICU into this big crazy world!

As for Kate, last week started great with us getting to hold her for the first time, but she hit a few bumps in the road starting the following day. A few small issues snowballed and caused Kate to take a few steps back in her progress. Kate's belly became round and distented and after further investigation, the dr's found that she wasn't digesting the breastmilk she was receiving as well as they had thought. They found 13 ml of partially digested milk in her belly along with pockets of bowel gas. In short, her bowels didn't have good motiilty and her intestines weren't able to process her food as well as they had thought. On top of this, the swollen belly didn't allow Kate to expand her lungs as much as needed in order to take good, deep breaths so her ventilator settings had to be increased to assist her breathing. Additionally, Kate has a lot of thick secretions in her endotracheal tube so they've had to do physiotherapy on her chest every two hours and suction her tube to remove these secretions. John and I were so disappointed. We were so encouraged by Kate's progress and then - like the flip of a light switch - we went from moving forward to stepping back. It seems like just when you think you've turned the corner, you hit a wall. However, our Kate is showing again how tough she is. After 5 days of taking a break from feeds and allowing the gas in her belly to reduce, the dr's decided today to reintroduce the breastmilk in smaller amounts and to increase it very slowly based on her response. They also gave her Eurythromyacin which will encourage motility in her bowel and intestines so that hopefully, she will resume stooling again. We're hoping that she will again begin to slowly wean down on her ventilator settings so that someday soon she can get closer to extubation. This little girl has chutzpah and if any baby can do it, she can.

So, there you have it. An update on our bambinos. We also hired a terrific nanny last week that I'm thrilled to have on board with us. I'm dead tired tonight, but I'll blog a little about Fran in the next few days. She's a dynamo!

Please continue to keep all four angels in your prayers as well as our little man Luke. The coming weeks and introduction of these four little ones into his life are going to be a challenge but I know that he will grow to love them as much as we do. Luke is such an amazing boy. I simply adore him. Please also keep John and I in your prayers also as we begin the next chapter in this amazing journey. May we be reminded daily of just how blessed we are to have these five precious gifts to call our own.

Wednesday, August 20, 2008

Attention all "Rockers", "Cuddlers" and "Walkers"

Rocking, cuddling and walking . . . three things that all babies need! When baby is fussy, or just needs loving attention, one of these time-tested techniques usually does the trick. The challenge for Carrie (especially while John is at work) will be to give Kate, Claire, Elizabeth and little John all the care and nurturing they each deserve. But, as any parent can imagine, this will be impossible with only one set of hands! That's where we come in . . .

Hi, I'm Susie, Carrie's sister. I'm organizing a group of volunteers called the "Diaper Darlings," who will lend a hand to Carrie and John once the babies come home from the hospital. Diaper Darlings will help Carrie with feeding, diapering, and other aspects of baby care. Since it will be important for the Lemonovich family to develop a routine for the babies, we're looking for Diaper Darlings who would like to come to their house in Bridgeville and help on a regular basis, anywhere from 4 to 8 hours per week.

If you have that special knack with newborns -- or you just want to spend some quality time with the cutest babies on the planet! -- please send me an e-mail with your name, telephone number, and the day(s)/time(s) of the week you'd like to help. Our Diaper Darlings schedule will begin when at least two of the babies come home from the hospital, hopefully sometime in mid-September.

I'd love to hear from you!

Susie Bishop

Monday, August 18, 2008

A big day for our little babies....

Today started like any other day...get up early to take a shower before Luke wakes up, pack all of my bags and head down to see the babies at both hospitals. I have to say that driving to both places is getting to be a real pain in the you know what! I spend more time in traffic jams and looking for parking spaces than I do with my kids and that drives me nuts!

I decided to head to see Kate first so that hopefully I could have a chance to chat with her doctors to see how they feel about her progress since the surgery and when they feel she might be able to rejoin her sisters and brother at AGH. I apologize for not blogging about this sooner, but last Wednesday was the first day that Kate was given breastmilk! She started on a only a 1/2 cc as I mentioned and she tolerated it pretty well. They have slowly been increasing her feeds and as of today, she is getting 4 ml per hour (again, 30 ml is 1 oz.) and she weighs3 lbs, 14 oz. That is absolutely amazing and if you had seen Kate when she was born vs. the way she looks today, you wouldn't believe your eyes. This little girl and her progress is nothing short of a miracle. Anyways, when I got to the hospital, I was excited to find that one of our favorite nurses (and Kate's!), Courtney, would be caring for her today. Courtney greeted me with fantastic news. The surgeons have kept a watchful eye on Kate and were very pleased with her progress since starting the feeds. They are going to continue increasing her milk 1 ml per day as long as she tolerates it well and if all goes well, they are hoping that she might be able to return to AGH with the other in a week or two! You have no idea how thankful we are to hear this - our kids can finally be together again and we can spend all of our time cooing and cuddling with them instead of driving all over the city of Pittsburgh just to spend an hour here and an hour there! And then Courtney gave me the best news of all - the doctors said that I would be able to hold Kate today. Our babies are 55 days old today and we've never gotten to hold Kate because of her various medical issues. I cried like a little baby at the news. Courtney gently lifted her out of her "cave" (her isolette) which she hasn't been out of since she was born, and placed her on my chest for some cuddle time. I cannot begin to tell you how amazing this was. We cuddled for about 20 minutes before it was time to put her back in her isolette. I couldn't wait to call John and tell him, but I knew he was in a meeting so instead, I had Courtney take a picture of me holding Kate and we text messaged the picture to him with a note that said "look who I'm holding!". We quickly got a message back from Daddy who said "AWESOME!" and told me to call him asap. I shared the great news about Kate's progress and hopeful return to AGH. John was able to go see Kate after work and he too got to hold our little princess. Here are just a few pics from our special day. Check out the cute little bow Courtney put in Kate's hair:

BUT WAIT....THERE'S MORE GOOD NEWS!!! After spending time with Kate, I headed to AGH to see John, Claire and Elizabeth. The doctor told me over the weekend that it would be a good time to try and start bottle feedings with Elizabeth and Claire. John is probably just a week or so away from giving the bottle a try but Elizabeth and Claire are ready to go so today was the big day! Elizabeth went first and her nurse, Susan, cautioned me that usually premature babies don't do so well the first time out. They play with the nipple because they think it's a pacifier but once the milk starts to flow, they get confused because sucking, swallowing and breathing all at the same time is new for them and very difficult. Many times the babies will start to gag because they don't know what to do with all of the milk building up in their mouths. So, I didn't have any great hopes for our first feeding. I gave Elizabeth the bottle and she gently began sucking on it. Her eyes opened wide as the milk went in and she began to swallow. Before I knew it, she had half of the bottle down! Susan was in shock! We took a break for a burp and then continued on and I'm proud to say that on her first time out of the gate, Queen Elizabeth finished her entire bottle! Feeding from a bottle represents a great deal of work for these tiny little babies so one bottle per nursing shift is the maximum allowed for now. After she was done, Elizabeth curled up in a little ball back in her isolette and was fast asleep on her belly in no time. She was so content! Claire was next to give it a try. I have to give mad props to my girl Claire because not only is she probably the most alert of all four babies, but she is also the first to come off of any type of breathing support. Claire breaths totally on her own as of late last week and is doing an awesome job! She also makes the nurses laugh because every 3 hours - on the nose! - she let's out a big cry to let them know it's feeding time. I placed the nipple in Claire's mouth and she also opened her eyes big and wide once she started to taste the milk. She sucked on it happily for awhile and finished probably 3/4 of her bottle before she tuckered out. Like I said, learning to breath, suck and swallow all at the same time is a lot of work for these little kiddos so I was so proud of how well both did on their first try!

My little man John was sound asleep in his isolette the whole time. John was a little pale today and will probably need a blood transfusion for a little pick me up. These transfusions are routine for premature babies and hopefully, once John gets his tank filled, he too can try and start to feed using the bottle. John also has been doing VERY well on his nasal cannula. They have attempted to remove this support and let John breathe on his own, but he stills needs a little help every once in awhile so for now he remains on the cannula.

Our mantra around the Lemonovich house these days is "we glory in the small victories". Today however, we were able to clear a few large hurdles and takes some pretty big steps closer to having our kids come home. Thanks be to God!

Tuesday, August 12, 2008

Happy 7 week birthday babies!!!

Hi everyone....can you believe it!? The babies are 7 weeks old today! In some ways, it seems like they were just born yesterday and in other ways, it seems like they've been around for years. The past 7 weeks have been so hectic and filled with the full range of emotions but I'd do it all over again in the heartbeat. Just seeing their faces makes my heart melt and I can't help but kiss them from head to toe. GOD IS GOOD!!!

Thought I'd post a quick blog and update everyone on how the babies are doing. I'll start with Miss Kate as she is the one who has had the most excitement over the past week or two!

Kate - I'm happy to say that Kate is doing well following her surgery. She spent a few days following the surgery on the oscillating ventilator and she's now back on the conventional ventillator. Kate really hates this machine and she desatures a decent amount more when she's on it, but the machine represents WORK for Kate so she's not as keen about it. She is still a little swollen from the constant flow of fluids that she gets through her artificial nutrition, medications, etc. but the diuretics are helping her to pee most of the fluid off that she has retained. As of this Friday, she will finally be done with the Phenobarbital she has been on for the past 2 weeks due to possible seizure episode she has a few weekends back. She has had no additional episodes so I think the neurologists feel that what she experienced was either not a seizure or possibly just a one time thing. The really big news for Kate is that they are going to attempt feeding her sometime this week, possibly even tomorrow! They are going to start with extremely small amounts of breastmilk - only a 1/2 cc in the beginning. Increases in the feeding amount will be very small but if she tolerates it well, they will move her up slowly. The breastmilk will do wonders for Kate's overall health, including her lungs so I'm anxious to pump her full of milk so that she gets bigger and stronger with every feeding. I'm just so thankful to God that she's here.

Elizabeth - or as Susan, one of the nurses in the NICU, calls her "Queen Elizabeth"! I just love that! Elizabeth is big and plump and happy :) She weighs 3 lbs., 11 oz. and is doing quite well. Like Kate and everyone other preemie baby, she does desaturate a little more that the other two, but she is still getting a relatively small amount of oxygen in through her tiny nasal canula. I've decided to try and nurse a different baby every time I visit. I'm not going to continue breastfeeding once the babies come home (although I'm going to continue pumping milk for them) but the doctor suggested that nursing them occasionally would not only be a chance for them to bond with me, become familiar with my smell and allow them to share my body warmth, it would also increase my milk supply. I started today by nursing Elizabeth for a short bit and after a few eye opening looks from her saying "what the heck is this?!?!?", she actually did quite well for the first time out. We'll keep working on it occasionally over the next few weeks. So, my little 'Lizabeth is doing well!

Claire - Claire is definitely the most alert of the four babies at this point. It seems like every time I visit, her eyes are wide open and she's squirming around making noise. Her cry actually sounds like a duck! She is quite the demanding little lady also as every three hours, she's like clockwork squealing for her feeding! Claire is now 3 lbs, 6 oz. and is only on a 1/2 liter of oxygen which is awesome! They are hoping to try to wean her completely off of the oxygen over the next few days so we'll see how she does. She is definitely getting stronger and I'll try to nurse her next so that we can share a little snuggle time with each other :)

John - my "little bird" is just SO adorable! John and I snuggled for awhile today and he just makes your heart melt. He is so calm and laid back - very much like his Daddy! John weighs 3 lbs, 1 oz. as of today. He still seems so much smaller than the girls, even though he's just 5 oz. less than Claire. He is doing SOOOOO well on his nasal cannula and is quietly becoming onE strong little boy. I was asking the nurses today about why he appears to be so much smaller and they said that boys, in general, develop more slowly than girls. Also, as you all recall, John's sac ruptured 4 days before the babies were born so he probably lost some nutrition from that episode as well. All in all though, my little man is lookin' good. He'll be bypassin' those girls before you know it! :)

Thanks to each of you for keeping our four little treasures in your prayers! We ask you to keep one of our NICU friends, Joey, in your prayers also. We've gotten to know Joey over the past 7 weeks while her son was in the NICU with Kate. Joey's little boy, Wyatt (who was only 5 days older than our quads) passed away on Saturday after struggling with some serious genetic issues and an infection that occurred after he had surgery. Joey is a very brave 20 year old single Mom who despite the odds and the suggestions of her doctors, decided to give little Wyatt a chance at life. His time on this earth may have been short, but the joy that he brought to his Mom in those 8 short weeks is something she will treasure forever, I'm sure. We ask that God would bless Joey with the peace that passes all understanding now that her little angel is safe in the loving arms of our heavenly Father.

Wednesday, August 6, 2008

Thanks be to God for a successful surgery today!

After 6 weeks of anticipation, apprehension and uncertainty, we are thrilled to report that Kate's surgery went extremely well today. When we got to the hospital we were concerned to see that Kate was still on the oscillating ventilator. We thought for sure that this was sign that the surgery would be delayed again - how can you do surgery on a 3 lb. baby while she is being gently shaken by a machine? We talked to Brad, the surgeon, however who said that although it's not optimal, he could do the surgery on the oscillator. This totally blows my mind! Brad has been absolutely amazing and his incredible surgical skills on babies this small and his ability to communicate with nervous parents such as ourselves are truly gifts from God. Kate appears to really like the gentle vibration the oscillator provides as it assists her in the breathing process so Brad felt that keeping her on it would be best for the surgery. He also decided that instead disrupting Kate and moving her from her isolette into the operating room, he would do the surgery bedside in the NICU. For those of you who have never seen the Childrens Hospital NICU before, it is typically a place of a million beeping machines with cords stretching everywhere in the midst of sheer organized chaos. To top it all off, it's a wide open air room so when a bedside surgery is performed, they have to clear all visitors and unecessary personnel out prior to getting started. This also totally blows my mind that they can do these complicated procedures right there while Kate is still in her bed! We spent most of the day just sitting next to Kate just waiting for Brad to say that we were next in line. He finally came over around 4:00 and said that we were next in line and told the nurses to get everything ready. I started to cry just thinking about what my little girl was about to go through. I was so scared as all of the "what if's" raced through my head. John and I talked with Brad who reassured us that he would take excellent care of our little girl and treat her as though she were his own. That meant so much to me as there are so many doctors today who forget to be human in the process of being a medical professional. John and I waited about an hour and a half and then Brad came into the waiting room to report the good news. There were a few possible outcomes from the surgery. The options, based on what they found once they opened Kate up, ranged from just simply snipping the remnant, putting a few stitches in the intestines and sewing her back up to snipping the remnant, bringing both sections of the intestine up to the surface of her skin in the abdominal area (this is called and ostoma) and having the ostoma drain into a bag for a few months until she is old enough and big enough to have a second surgery to reconnect the intestines. Brad initially told us that there wasn't a great chance of just snipping the remnant, doing the repair and sewing her back up yet this is exactly what happened. Brad actually took pictures on his PDA of Kate's intestines which he examined while doing the surgery. The pictures were absolutely amazing and he said he would email them to us at home to get a better look. He found no perforations or other areas of concern in the intestines which was also fantastic news. At the end of the day, we got to go back into the NICU and see our little miracle. She was still sedated from the anesthesia although she was slowly starting to come out of it and she looked absolutely beautiful. They took a blood gas reading just after we came back and they said that her readings were actually some of the best they had ever gotten from her. They will continue watching Kate very closely over the next few days to make sure they she does not get an infection at the suture site in her intestines or that there is no leakage from the suture site. If all goes well, they hope to begin starting Kate on very small feeds of breastmilk in about a week. Overall, not a bad day for Miss Kate to say the least. Here is a picture of Kate taken yesterday one day before her surgery (quite a chunky little monkey huh?)

We give thanks and praise this night to our Heavenly Father for using Brad, Kate's nurse Breanne, and the rest of the medical team as his instruments of healing. God has truly blessed our family and we ask you to join us in continuing to pray for Kate's recovery and progress as she moves forward towards starting regular feeds of breastmilk.

Just a brief update on the other 3 quad babies over at AGH, all is going well with them. All 3 continue to grow steadily and increase their feeds. Within the next few weeks they may attempt bottle feedings as another big step toward their homecoming. We have found through all this that no news from the NICU is definitely good news and lately, it has been pleasantly quiet over at AGH!

Just a random great picture of Luke and his good buddy Sampson:

Good night for now.

Tuesday, August 5, 2008

Kate's surgery still on for Wednesday...

We went to visit Kate today and as of right now, we're still scheduled for surgery tomorrow. They were able to wean her off the ventilator and she is currently back on the conventional ventilator. Her blood gases were decent today and the surgeon said that he is prepared to move forward tomorrow if she remains stable through the night. They'll take her gases again in the morning before making the final determination.

Tomorrow is going to be a long day but we know that God is guiding the hands of the physicians, nurses and medical staff who care for our darling baby Kate. We'll let you know how everything goes just as soon as we get a chance.

Monday, August 4, 2008

Kate's surgery on Wednesday???

Yet another rocky weekend for our sweet little angel, Kate. Kate continues to have respiratory problems which are still considered somewhat normal for a preemie born at 26 weeks, 6 days at 1 lb. 4 oz. Kate was moved from a conventional ventilator to an oscillating ventilator this past weekend. Her lung on one side collapsed slightly so the oscillating ventilator is used to provide continuous pressure to the lungs to keep them wide open. This helps Kate to stabilize so that she doesn't have to work so hard to breathe and also helps her to blow off her carbon dioxide efficiently. However, at the same time, the oscillator is considered a step backward as it is providing even more support to her already fragile lungs. Her blood gas readings were also low over the past few days so as I said, not the greatest weekend for our little one. Her blood gas readings were better today and when I went to visit, the neonatology attending physician and fellow informed me that they spoke with the surgeon this morning about Kate. He has decided that if they can wean Kate off of the oscillator and stabilize her for at least 24 hours on the conventional ventilator with good blood gas readings, then he will perform the surgery to repair her omphalomesenteric duct remnant on Wednesday. As I've said so many times before, I so badly want them to be able to do the surgery so that Kate can get on the path to good health and start receiving enteral feeds of breast milk yet at the same time, the thoughts of surgery are so scary to me. I know that Kate is in God's hands though so I ask that you join us in prayer that Kate would have her surgery on Wednesday and that they would be able to succesfully repair her duct remnant easily and with as little reconstruction as possible.

We'll keep you updated on the status of the possible surgery...