The Latest and Not So Greatest...

Yesterday I went in to see Noah and everything was going great. They had removed his feeding tube because he was taking all his feedings by bottle. Then I was able to go in to rounds where the neonatologist, nurse practitioner, developmentalist, dietitician, social worker, charge nurse, bedside nurse all get together to discuss Noah's plan of care. That is when they brought up the topic of going home. That is the first time I had heard about the possibility of going home soon. In order to take him home we have to be trained in infant CPR as well as trained on how to use the apnea monitor and the oxygen. I went ahead and scheduled Aaron and my training for Saturday morning and we got a tentative discharge day of the following Monday if Noah continued to do great. Aaron and I were so excited! That lasted until I came in this morning to find out Noah had had an "episode" with his 5 pm feeding the previous night. During his feeding he dropped his heart rate and oxygen rate dangerously low and couldn't recover. The nurse ended up putting the resuscitation mask on him and using the bag to squeeze 100% oxygen over his mouth to help him recover. That is scary and it also means that a Monday discharge date is out of the question now. However, I had already set up babysitting for Saturday so Aaron and I will still be trained on the equipment, but we won't be needing to use it for a little while. We are definitely learning patience!!

As for my sis-in-law Jill she continues to be on complete bedrest (they aren't even letting her up to use the bathroom). They are trying to keep her pregnant as long as possible so she can't have any pressure on the cervix to keep her from going into labor. She has made it passed the critical 48 hours so now the next "goal" will be making it to 30 weeks which is in 4 more weeks. They are even hoping she can make it passed 30 weeks, but we are taking it day by day. Her body could go into labor at any minute so keep her in your thoughts and prayers please.

Jill and Noah Update

Jill, my fabulous sister-in-law who has been here helping me out for the last four weeks while I recooperate from having a c-section and a preemie, was supposed to go back home to Texas today, but of course things don't always go according to plan. She came upstairs yesterday morning and woke me up crying and saying something was wrong. I called Aaron and he came home from work to take care of the kids so I could take Jill over to Labor and Delivery to see what was going on. This is her first pregnancy that has lasted this long and she is only 26 weeks along of a 40 week pregnancy. She's really early to be having problems. They put her on a monitor and saw a few contractions. They then started an IV, and sent her over to see the Perinatologist who is a doctor who deals with high risk pregnancies. They did a big ultrasound to check out the baby and found she had no cervix left and was trying to go into preterm labor. Luckily, the baby looks fantastic. Unluckily, she will have to spend the rest of her pregnancy on strict bedrest in a Utah hospital. She has almost made it past the first 48 hours which is the most critical time to see if they could stop her labor. So far her contractions have stopped so we are hoping she can stay pregnant for a while yet. It is really hard for her to be away from her home and to have all this happening. However, her husband was able to make it in from Texas to see her last night. It looks like she will be stuck in Utah for a while longer. At least with her coming with me to visit Noah she has gotten to know the NICU staff and the routines there. However, we are hoping she doesn't need their services for a while. The crazy thing is she has been put in all the same rooms I was in during my stay at the hospital. She was in the same L&D triage room, the same perinatology room, the same regular labor and delivery room as me. Also all the nurses have found out our story--Jill came out to help me while I was in the hospital pregnant and having a preemie and now the roles have been reversed. So the nurses in the NICU will ask how Jill is doing and the nurses in L&D will ask how Noah is doing. It has been crazy!! Anyway, keep her in your thoughts and prayers please because she needs them.

As for Noah he is doing good. He was having problems with reflux so they put a thickener in his milk to help him keep it down than refluxing it. It looks like it has helped. He is still having problems with his heart rate slowing down and him stopping breathing, but it is getting better. Instead of waking him up to eat every 3 hours, they have let him wait 4 hours in between feedings and it has helped. He has woken up and taken all his feedings by bottle today which is amazing! He is getting better day by day. Here's him fully awake just after his feeding today:

Sprung a Leak

Today for the third time this NICU stay Noah let loose while changing his diaper and got pee all over everything. Then while we were cleaning that up he decided to poop all over everything. We are out of practice of changing baby boys' bums and are just not fast enough. Good thing it was bath day today so he was going to get washed and changed anyway. Unfortunately, after his bath Aaron was drying him off and he ended up pooping even more on Aaron's shirt. We just couldn't win today :). He continues to be on oxygen and can't quite get off. He is getting more alert every day and will stay awake for more feedings. He still isn't waking up on his own yet, but maybe soon. He loves to snuggle and it's nice. Here's some new pictures: Here's my little burrito all snug and tight swaddled in his blankie:

He did nurse today for a whole feeding, but it wore him out. He didn't even wake up to burp.

In other happenings it looks like Daniel is as exhausted as the rest of us. The other day he curled up in his blanket on the floor and was asleep within minutes.

As for Sarah we have learned she loves to dip anything in anything. It has ranged from dipping poptart in fry sauce (YUCK) to dipping chips in salsa (which she LOVES). We have also learned she is a poser and will say "teez" and smile when she sees you holding a camera no matter what she is doing. We have also discovered she loves her toenails and fingernails painted. Jill and I were painting our toenails today and she would come and plop herself down in either of our laps and scream until we painted her fingernails/toenails, too. I am excited to have at least one girly-girl.

Reader's Theater, Bathing and New Clothes

Today Josh had a special program at school. It was called Reader's Theater. It is when a group of first graders read a Dr. Seuss book aloud with each child taking a different part. Josh's group read the book Mulberry Street. Josh loved reading his part and did a great job.

As for Noah I got to bath him for the first time today. I forget how squirmy and slippery newborns are, but he survived the bath. It did tire him out pretty much for the rest of the visit. I tried to nurse him, but he kept dropping his heart rate and oxygen saturations really low, so they ended up just tube feeding the rest of his feeding. At least I got to snuggle him while he got his tube feeding. After his bath we brought in our own preemie clothes to get him dressed in. Here are some pictures of his new clothes:

1 Step Forward, 2 Steps Back

That's how it is with preemies is one step forward and two steps backward. Noah has been trying so hard lately with eating, breathing and growing he has worn himself out. He has needed to be put back on oxygen. He is also having bradycardia and apneic spells as well. This is when his heart rate slows way down and/or he stops breathing every so often. Although a little scary this is normal for a premature infants, unfortunately. He has worked so hard eating and breathing for the last week he has worn himself out and will not wake up for anything. The nurse changes his diaper and takes his temperature every three hours and he will sleep through it. He was so tired yesterday he slept through his entire bath. When I go in to visit most the time he will wake up and breastfeed for at least five minutes and sometimes longer which is great. However, afterwards he sleeps through a few feedings to recover all the energy he expended while nursing. He does the same thing after trying to eat from a bottle as well. For the feedings he sleeps through they just feed him through his NG tube (the tube in his nose). Also to help him grow and develop they have added a fortifier to my milk for extra calories as well as extra calcium and phosphorus to aid in his development. The developmentalist came by again yesterday and he is doing well for his gestational age and even a little ahead of the game for eating. They did find he has a heart murmur, but they aren't worried about it. Daniel has a heart murmur as well and it has not slowed him down any so we aren't too worried. So we are just waiting for him to mature enough to regulate his eating, breathing and heart rate. We are learning patience...Here's some pictures from today with Noah showing off his oxygen tubing and stickers. He also woke up enough to suck on his fingers and nurse for about 7 minutes which was pretty good for him:

My Littlest Big Girl and Noah's Latest

We figure since Noah will come home eventually, we better start thinking about getting Sarah out of the crib. Jill put her down for her nap in the big bed yesterday and she did great. Today, however, she figured out she could get out and she first snuck down the stairs. When Jill put her back she got out again and went and played with toys. Hopefully she will figure she needs to stay in bed for nap time.To keep things exciting two of our cars refused to start yesterday morning. However, lucky for us, they were both fairly easy fixes so for now we have three working cars. We are hoping it stays that way too!

As for Noah he is still about the same. We are still working on his eating. He continues to be very sleepy and can only stay awake for about two feedings every 12 hours. The rest of the feedings are through his tube in his nose. He has started breastfeeding and doing well for the one time a day I can make it up to the hospital. He is getting a little stronger every day. Since he was so early we are having a little trouble with him dropping his heart rate and his oxygen saturation rate every so often. About half the time he can recover back to normal on his own, but the other half the nurse needs to come in and stimulate him to help him recover. This is common with preemies and it is something they will keep an eye on before they deem him able to come home. Hopefully as he continues to mature that will get better. Other things I have learned about preemies is they use yawning, hiccups, and sneezes to show when they are stressed. Noah usually gets the hiccups at least once, with a few sneezes and yawns while we are there, but that's to be expected. Here's some of the latest pictures of him: This first one shows him with his wrinkled eyebrows and open mouth which makes him look very concerned. He has this look a lot.

Signs of Spring

We have been so busy lately we have not had a chance to do much with our yard. This has left the boys with many opportunities to bring me bouquets of yellow flowers. The boys think they are just beautiful. The bad thing is that these are only from the backyard--the front yard has many more to choose from: As for Noah he is slowly learning how to eat from a bottle. I have been able to nurse him a few times, but he just doesn't have the energy to do much more than five minutes. With the bottle he is learning, but he can only eat from a bottle every other feeding or every two feedings at the most because it just wears him out. He is still recovering from his rough start in life. The feedings in between the bottle they put down the feeding tube in his nose because he is too tired to wake up and eat from a bottle or to nurse. When they do feed him from a bottle, if he doesn't finish the bottle they just put whatever is left over down his feeding tube. They have estimated about two more weeks of being in the NICU so hopefully, the end is in sight, but we will see.

Latest and Greatest

With Josh's last seizure cluster three weeks ago, we called the on call neurologist and he upped his new medication to the maximum amount for his weight. He then told us we needed to make a follow up appointment in the clinic ASAP. However, during his stay in the hospital he was so sedated and couldn't stand to be weighed so instead of weighing him they just asked me how much he weighed. I guesstimated and I unfortunately guessed wrong. I didn't know how far off I was (10 pounds) until I weighed Josh after his last seizure cluster. That meant they dosed his medication off the wrong weight which is a big deal. Well we had a follow up appointment scheduled for the week that my pregnancy went downhill so of course we didn't make the appointment. We ended up scheduling it for last week instead. So far, as far as we know, Josh has stayed seizure free, but you just never know for sure since he has the majority of them during sleep. Anyway, we have to back off his new medication a little since he doesn't weigh as much as I thought he did. I am just hoping it doesn't set him off with seizures again. We are backing it off very slowly over the space of 4 weeks so hopefully nothing will happen. As for this new medication, we are dealing with quite a few side effects, but we are hoping they will fade in time. He is very emotional. They warned us this is a common side effect. His P.A. even said, "He may grow horns and a tail." which sometimes explains him right now. However, they don't want to mess with any of his meds for a couple months just to get him all the way settled. It may be a long couple months...

As for Noah he is doing well. They are trying to get him eating from a bottle, but he still continues to be too tired to do much. They keep telling us it just takes time for him to recover from being premature so we are learning patience right now. At least this gives me time to fully recover before bringing a newborn home. Here is a picture of him in his cute clothes from today:

Slowly Learning...

Wow, the last month at our house has been pretty crazy. Between Josh's ER visits, ambulance ride and hospital stay, my 9 day hospital stay, having a baby, Noah's hospital stay, having two different cars break down (stranding Aaron both times), and yesterday our 2 year old TV completely died, I am trying to see what I should be learning from all these experiences. I am trying to learn it fast because I don't know if I could handle something else going wrong. I do know that going through all this it makes me appreciate when things run smoothly (and when everything is working like cars, appliances, TVs, etc.) in my life. It also has taught me that a lot of people are willing to help and it is through people that the Lord can help each of us. We have been really humbled and have really learned that (especially with my and Noah's hospital stay)we have had many offers of help and I have had to really use them because we have really NEEDED the help. I have learned that we truly aren't in as much control of our lives as we think and I guess it took all this to make me realize I cannot do this alone. Lastly I have learned that no matter what we put in our Flex Spending Account for the year it is never enough :). Hopefully I have learned whatever I have needed to because I don't want to learn any more right now....my brain hurts.

Oops

Today we went to visit Noah. When we first got there he was fast asleep, but in the NICU they like to keep them on a 3 hour schedule. So at 11 am was the next time to change his diaper and start a feeding. I got in and was changing his diaper when he decided to go crazy. I wiped and he then let loose and got poop all over his clothes, diaper, and bedding. They had to give him a sponge bath, change his clothes, and change his bedding. In the process he pulled out his feeding tube that was in his nose. They had to replace that, but by this time he was fully awake. The developmental therapist came by to see him and evaluate him. She checks his reflexes to make sure he is developmentally on par with his age or gestational week. He did great and is right where he needs to be. Since he was so awake they let me try and breastfeed him. He did a lot better than I thought he would. He lasted about 5 minutes and then was fast asleep, but, hey, it was a great start. He is doing so well and it is exciting. I know he will be in there for awhile yet, but he is headed in the right direction. Today I got to really hear him cry which is the first time since he was born. I had to record it to play for the kids because they aren't able to see Noah since no kids under 14 are allowed in the NICU. The movie is showing the developmentalist moving Noah around and he is not liking it. I also included a picture of him really sucking on his binky while waiting to get his clean, unpoopy clothes on.

Free Man

Yesterday Noah was able to get his central umbilical line taken out. He also was able to get off the oxygen as well. So for now we will be working on feedings. We have our work cut our for us because he does not wake up for more than a couple of minutes and he isn't even rooting around yet. He needs to become more alert before we can even start bottle feedings so for now he is getting fed through a feeding tube down his nose every three hours. At least he is in an open crib because he is able to keep his body temperature up. He is also now able to wear clothes and he looks very cute in the huge newborn clothes the nurses have dressed him in. Here are some of the latest pictures: I got to do some skin to skin bonding. They have found that babies have done better when they can snuggle close to their moms skin to skin. I loved it. Here's Noah wearing the huge newborn clothes the nurses dressed him in.Aunt Jill got to have a turn to hold Noah as well.
Noah got the hiccups. We recorded them because we thought they were pretty funny.

Cuddle Me

Noah's chest tube was able to come out this morning. That meant when I visited this morning I got to hold him. When we got there he was snuggled up in the incubator on his tummy. He still has oxygen by nasal cannula, feeding tube and a central line (main IV) in his umbilical cord so he's not completely free of everything yet, but he's getting there. He is not tolerating his feedings as well as they would like, but they are working on it. He is also getting pretty jaundiced (yellow) so they might have to start photo-therapy tomorrow, but I figure he's already at the hospital so it's not that big of a deal. I am just glad to finally hold him again. He's so sweet! I just love the way a newborn smells and feels! We caught him mid-yawn:Resting on his tummy.

Noah Unmasked

I went to visit Noah this morning to find he had been weaned off the ventilator through the night. YAY! He looks so much better without so many tubes in his mouth. So now the next biggest hurdle for him will be getting the chest tube out and we are hoping that will be sooner than later. Let me just say I love this NICU! They let me be so hands on and I love it. Daniel and Matthew were also NICU babies, but they were at different hospitals where their policy is look but don't touch. So when I went to see Noah they encourage me to touch him and talk to him and it is nice. It is hard enough to have baby in NICU let alone not be able to touch him. Anyway, he is doing great. He is starting to get a little jaundiced (yellow), but they are keeping and eye on him. They may need to start the phototherapy lights tomorrow, but that's not that big of a deal. They are increasing his feedings through the tube, slowly working up to what a normal baby would eat. So me and my breast pump are getting to know each other really well--let's just say I feel a little like a cow in more ways than one, too. I am having a harder time recovering from a C-section. I have a dream one day that I will be able to walk upright at some point, but as for now it's just slow and steady. Sneezing, laughing and coughing are torturous, but are getting a little easier every day. Amazingly enough my liver enzymes are almost back to normal. It is so crazy for pregnancy to get me so sick and for me to recover (liver wise) so fast after delivery. I can honestly say I don't know if I could physically survive another pregnancy so this one will be the last. I have mixed feelings about this, not that I could handle any more kids, but it is for the best. We have found out that Noah likes to suck his thumb, so that will be my third thumb sucker. Anyway here are some pictures of my sweet baby from our visit this morning and one even shows him trying to find his thumb:

Here is some footage of the little movements Noah made--it is hard to believe he was just doing this inside my tummy less than a week ago!

Home Sweet Home

I finally got to come home today. That was one long nine day stay!! However, leaving my baby behind is one of the hardest things I have had to do. This is the third baby I have had to leave behind in the NICU and it does not get any easier the third time around. I cried all the way home because it is hard to leave part of your family behind. To try and lighten things up I will tell you what happened at home in my absence...Unfortunately for Jill this week was Spring Break for all the kids which meant there was no school. Let's just say idle minds are the devil's workshop. Josh and Daniel wanted to play an April Fool's joke on Aunt Jill. They waited until she got in the shower and decided to rig up a joke. When she got out Josh and Daniel called her upstairs to show her their surprise. On her door they had hung a ransom note saying something like, "You need to clean this room or else you will go to your room. April Fools! now you need to let us do whatever we want." If he didn't get his demands he had a fake bomb set up. Oh the imaginations of a 7 and 4 year old! He even made a list of all things they wanted to do starting with swimming, going to Texas, not needing to clean up anymore, etc. He then made a fake bomb saying if Jill didn't comply she would be in trouble. To emphasize his point he made a trail of Kleenexes up the stairs over to the wall where he colored on the wall showing what would happen if the bomb went off. The only bad thing was he used permanent RED marker on my wall and floor right by the front door--AWESOME. Scrub and scrub as hard as she could Jill still can't get the marker off the wall. I guess we will have to repaint that area...I am still laughing about it even though Jill is super embarrassed. In my absence she did an amazing job keeping the kids entertained during the whole week. Since I was in the hospital during Josh's birthday yesterday we decided to celebrate his birthday today. Aaron picked up a cake. Aaron put the candles on it and Josh blew them out as soon as they got into range. I asked him if he made a wish and told me he hadn't yet, he just wanted to blow the candles out. Afterward he got to open his presents.

As for Noah, he's had a setback. He had a pneumothorax (free air in his chest cavity) or tear in his lung so they had to put in a chest tube to get all the free air out so his lung could fully expand. Unfortunately, his chest tube clogged last night and they had to replace it which is a big event. That meant he needed more breathing support from his ventilator so he will be on it for a while as well has having the chest tube in place. It is frustrating to see him totally off any oxygen a few days ago to being on a ventilator with a chest tube right now. I know it will all get better soon, but it is hard to see him struggle so much. Aaron and I got to attend rounds this morning for him. Rounds is where the dietitician, charge nurse, bedside nurse, case worker, social worker, neonatologist and pharmacist all get together and discuss the baby's plan of care. It made me miss my days as an RN, but at least I could understand what was going on which helped a lot. Anyway in the mean time keep Noah in your prayers and I will turn my attention to my other kids because Noah is in good hands and my other kids seem to always need some kind of supervision as you can tell from the story above...:)

My Big Joshy Boy

Today amongst all the chaos of life for us right now Josh had his 7th birthday. I can't believe how fast 7 years have gone by!! I love my Josh and how big of a help he is for me. As for the interview here are a few things I know about Josh:

1. Favorite color: all the colors

2. Favorite Food: Hamburger

3. Favorite Subject in School: Anything especially art

4. Favorite Candy: Starbursts and Sonic Drinks (I know they aren't candy, but they might as well be according to Josh)

5. Favorite Activity: Miniature Golf and Bowling. He also loves watching movies as well (takes after his Dad)

As for Josh I am thankful he is part of our family. He really helps me out with chores and helping his brothers and sister with getting dressed and cleaning up. He really adds a lot to our family and is a great brother and son! It seems like I was just bringing home my sweet 9 lb 8oz baby boy from the hospital. 7 Years goes by fast! We love you Josh!!

Ventilator and Chest Tube

Unfortunately with NICU babies it is one step forward two steps back. Noah started having trouble breathing last night. It progressed from needing oxygen through a nasal cannula to needing to re-intubate Noah and place him back on the ventilator. In the mean time with him struggling so hard to breath he tore a small hole in his lungs so they also had to place a chest tube as well to help get out all the excess air in his chest cavity. The poor little guy just is struggling right now. So for now we have to leave him alone and not stimulate him in any way because he is working so hard to breath. At least I got to hold him last night because I don't know when the next time will be...Keep him in your prayers please. Here's a few pics from this morning with Noah sporting his new chest tube and umbilical line. The umbilical line is a central line where they can feed him and take blood from for labwork and blood gases: The last picture shows his big feet with little toes.

Rebecca and Noah Update

Rebecca had a rough night last night. It seemed that all she wanted to do was sleep and all the nurses wanted to do was wake her up every 30 minutes. It was a long night. She made an attempt about 11:00 last night to go see the baby but had to turn around halfway there because she was so dizzy from the meds she was on. She basically spent all day laying in bed until they turned off the Magnesium Sulfate she was on. Then she felt much better. She even got to go see the baby around 7:00 tonight (see picture) with Grandma and Grandpa T.

As for the baby, he now has a name, Noah Terry Mancil. He is doing much better today and, unlike his mom, is recovering well from yesterday's events. He spent the night on a ventilator, but at around noon, he was able to get off any assisted breathing apparatuses and is now on room air. Now we have to work on feedings. They start giving him just a little bit at first, around 5 cc, at every feeding, then increase it everyday as long as he is tolerating it. Ideally, it is a 5 day system to get him up to full feedings. He has a feeding tube for now. We don't know when that will change, but we will just have to be patient and wait for things to happedn. Right now, we are excited and pleased by his progress. We appreciate everyone's help and prayers. Please keep the prayers coming!

Presenting . . . "Baby Boy" Mancil

Well, the perinatologist said that if any of Rebecca's liver tests come back worse, or if her side hurts more, or if she develops a big headache, that they will go ahead and induce. Well, Rebecca woke up this morning feeling crappier than ever with a huge side pain (worse than before) and a monster headache. These are signs that things may be going south. I had gone to work, because I thought that nothing was happening today (see previous post). At about 1:30, I got a call from Becca saying they were inducing her. When I got to the hospital, she was in the Labor and Delivery area. When the nurse checked to see how far Becca was dilated before inducing, she noticed that she could not feel the baby's head down. They got the ultrasound out and found out that the baby was breech with his head under Becca's ribs. The doctor said that with Rebecca's liver inflamed as it was, it wouldn't be a good idea to turn the baby, so we went in for a C-Section. Rebecca was scared, but she did a good job. When we got into the operating room, we looked over to the transition area where the baby between the OR and the NICU and saw a familiar face. The NICU nurse was a lady from our ward at Church, so that was a blessing. When "baby boy" came out, he came out screaming. He is still needing help breathing with the ventilator, but he is bigger than most 33 1/2 week babies and the neonatologist (premie doctor) said his lungs sounded good overall. He ended up needed to be intubated and got a treatment of Surfactant to help his tiny lungs. He is 4 pounds 15 ounces and 18 inches long. He is definitely a cutie in my non-biased opinion. We have been blessed that everything has gone relatively good so far and want to thank everyone who has helped us. These last few weeks have been a challenge in our family, but we have the greatest friends and family anyone could ask for. Thank you to everyone who has offered babysitting services (especially my sister who flew 1200 miles to help us out), meals, and most especially prayers for our family. We truly feel blessed. Here are some pictures of the new tyke! He has yet to be named.