Thursday, January 29, 2009

Big Day, Bigger News

Today was a tough day and I am exhausted. Jaxon had a lot going on. First this morning, he had a blood test to check his hemaglobin levels. They have been low and the doctors have been discussing a blood transfusion. Unfortunately, the test came back low again today, so it was decided to give him the blood. I really didn't want to this but it seems it is for the best. It just weirds me out, even though I had 4 units of blood when I was in the hospital. I just didn't want Jaxon to have to go through that. But he does look better, his fingers are pink again and his cheeks are rosey. His temperature was up to, it had been low at 97 early this morning.

During his transfusion, he also met with his physical therapist. She worked with him and put him into several different positions. She thinks he is a bit high toned, meaning his muscles stiffen up and want to stretch out all the time. So once he gets home, he will need to do his exercise to loosen up.

Immediately following the transfusion, the neonatal opthamologist, came in to do a second exam on his eyes. She wants to make sure they are developing as they should be. He is a bit immature, which is to be expected, considering he is a preemie. He has to go visit her office in a couple weeks to track his progress. He'll visit her off and on, until his eyes are completely developed.

Then, at the end of the day, he was put on a new monitor system to track any apnea spells he has. This new monitor will be able to determine if his spells are life threatening and if he'll need a monitor once he gets home. It is a great tool, but it was very annoying and kept going off every few minutes when he was eating. It shreaks very loudly.

Ok, so the Bigger news is that, his Neonatologist said he may be coming home, Sunday night or Monday morning. I am very excited and can't wait to be done with the hospital scene. However, it is a bit emotional. It seems strange to think of having Jaxon all on our own. For the past 45 days, we have had assistance with him 24/7. And these nurses have been like angels to us. They care so delicately for Jaxon, as if he were their own son or grandchild. I have to admit that I am a little sad to leave them. These ladies are so special and caring. They have eached helped me to get to know my son and to learn how to care for him. Somedays, I feel that I would not have made it through this whole experience if it weren't for their encouragement. I will always remember their strength, love, and compassion. On the other hand, I am ready to bring my baby home and be the one to make the decisions regarding his care and to be able to hold and kiss him whenever I want. Even though I appreciate all of their help and wisdom, it can sometimes be hard to think of Jaxon has MY son, with everyone else telling me how to handle him. Anyway, I got off on a little tangent, but I am very excited that he will be coming home soon. We have officially began the count down.

Saturday, January 24, 2009

BIG BIG News

I moved out of my 'ol stuffy incubator today!! Now I'm in a new open crib with lots of fresh air. If I continue to maintain my body temperature I will get to stay in my new hang-out, but if my body temp drops for a lengthy time I'll have to go back to the "box". I also, haven't had any apnea spells for almost 48 hours. That's when my heart rate drops and I forget to breathe for a brief second. These are very exciting accomplishments for me because by doing this I'm getting closer to coming home.

Mommy and Daddy learned earlier this week that I may be home in 2 weeks!! That's probably the first week of February. I'm ready to bust out of here and get home. I know my parents are ready for me to be home too.
"My Crib"
From Random Pics-Jaxon

"The Box"
From Random Pics-Jaxon

Friday, January 23, 2009

1st Baby Shower

Today we had our first baby shower. It was hosted at my office by my great friends, Rebekah, Amy, and Randy. I continue to be amazed by everyone's generosity. We received the preemie suitable car seat, the matching stroller, a pack n play, diaper champ, tons of cute outfits, toys, and so much more. It was a really great party.

In addition to the awesome gifts, we had a mexican taco bar and the coolest cake ever. Randy's wife, Alice, made the cake. It was a butter cream carrot cake, with cream cheese icing and butterscotch drizzle- Let me just say- it was too die for. Alice really out did herself. Not only did it taste fantastic, but it was decorated amazingly, as well. She iced the sides in a basket weave pattern, and topped it with a baby(doll) covered in a blanket surrounded by fresh flowers. My description doesn't due it justice- it was very cute. Once I get the baby shower pics from Randy I'll post a pic of it. I can't wait for you to see it.

Rebekah and Amy, also out did themselves. They decorated the conference room splendidly. It looked like a wedding reception. They had cloth tablecloths with baby's breath centerpieces and tull tied around each chair. Very fancy! Hopefully, we got great pics of the decorations too.

It was a great day and I feel so blessed to be surrounded by such wonderful friends and co-workers. I don't know if I posted this in the past, but not only did these guys put together a wonder baby shower, but they also took care of me and my family during my hospital stay. Amy and Rebekah brought me food and kept me company during my first days in the hospital. And then after that they organized meals for my family with Randy, Jay, and Wendy (two other co-workers). In addition, Jay came over one night, during our worst snow storm yet, and SHOVELED our entire 3 car driveway. I can't say enough wonderful things about my office friends.

Friday, January 16, 2009

Nursing Success

Just a quick note... tonight Jaxon was able to nurse successfully. It's been a work in progress, because the activity wears him out and he's so small he can't be pushed if he's not ready.
Yesterday I met with Karen, the lactation consultant, and (sorry for the TMI) she gave me a nipple shield. It's a plastic nipple extender that makes it easier for him to latch on. I call it my magic nipple!! As soon as, we started using it it was like we flipped a switch. Jaxon thought it was the best thing ever. Anyway, tonight I wanted to keep practicing with our magic nipple, so at his 4:30 feeding session we broke it out. He latched on and nursed for 30 minutes and was able to take 30mL. That's almost his entire feeding by breast. He needs 35mL for it to count as a full feeding. But for our first attempt to really breastfeed it was a HUGE success. The nurses were floored by how much he took. His nurse, Jodi, said it is awesome when a full term baby takes 30mL and she also said, they almost never send a preemie home who is nursing. I think we have a very strong willed boy on our hands!! He must know that, as soon as, he can eat all his meals on his own he can come home.
On a personal note, it was the most amazing experience for me. I can't even begin to explain it.

1 Month Old

Yesterday, I turned 1 month old!! It has been a crazy, yet amazing journey. In just the past four weeks I have achieved some outstanding accomplishments. Dr Stich says I'm his best "student" because I listen to everything he tells me to do. And Dr Paidisetty says I am way ahead of the curve, when it comes to bottle feeding. Mommy and Daddy are so proud of me and can't believe how far I've come in such a short amount of time. For Mommy, sometimes it seems like the road has been a long one, but on the other hand it seems like time is flying by. For Daddy, he can't wait for me to get bigger so he can teach me to play guitar, take me to baseball games and on the family vacations he is already planning (Mommy hears him whispering all these things to me each night).

Well, it has already been a month and I am growing stonger and stronger everday. Hopefully, even though my parents aren't quite ready for me, I will get to come home by Valentines Day.

Thank you to everyone who has been praying for me. Your prayers have been much needed and very much appreciated. I love you all very much and can't wait till I am strong enough to meet you all.
From Jaxon Xavier

From Jaxon Xavier

From Jaxon Xavier

Wednesday, January 14, 2009

Squeaky Clean

On Monday night Eric and I gave Jaxon a bath. At least, I gave him a bath and Eric took pictures. It was his first "tub" bath! We used a little pink bucket and filled it with water. He is so tiny that there was plenty of room in the little bucket. He absolutely loved the water. The nurse said he'd like the way the water felt on his skin and he did. So far he really enjoys baths and gets really relaxed and tired afterwards. He is always so awake and alert at bath time.

Click on any picture to be directed to my Picasa album for more pics.

I really do like this!! I promise.
From Bath Time

From Bath Time

From Bath Time

Ahh! I feel nice and clean.
From Bath Time

Monday, January 12, 2009

Meeting Milestones

Tonights visit was a very exciting one. Jaxon weighed in at 3lbs today! We've been waiting four weeks for him to break the 3lb marker. This was a very big milestone for him and we are so proud.

He also took an entire feeding by bottle. This is another HUGE milestone, because once he is able to take his whole meal by breast or bottle he'll be very close to coming home. We tried breastfeeding tonight but that is still a work in progress. It makes him so tired to eat by bottle or breast. He actually falls asleep while he's trying to breastfeed and since it's time to eat and he's not really gettng anything from my breast he gets really frustrated and upset.

He also upgraded from a sponge bath to a tub bath. He really liked the water. I'll write up another post all about this experience and include pictures. I think Eric may have gotten a video, but I'm not sure. Eric and Dr. Stich were "shooting the breeze" so I'm not sure how it turned out, or the pictures. I'm so tired right now, so it will probably be tomorrow before I get this posted.

Well, our little guy is doing so well and we couldn't be happier. We feel so blessed!

Hungry Man!

Last night I got to give Jaxon his first bottle! He did such a great job too. His feedings have increased to 34mL and he took 25mL via bottle before getting tired. But it was great just being able to feed my little boy.

He has been getting all of his feedings via a feeding tube, and once he is able to take all his feedings by bottle or breast he'll be another step closer to coming home.

Additional Note: Tonight we learned that Jax took his morning feeding totally by bottle. All 34mLs!! Jax and I also tried breastfeeding again. He is does pretty good finding where his mouth needs to be, but he doesn't have the sucking thing down yet. I can tell breastfeeding is going to be a challenge, but I'm sticking with it.

Thursday, January 8, 2009

Tonight's Visit

It is becoming harder and harder to leave my little man. He is still obviously so tiny, but for the past few weeks he has seemed so helpless. Now he is off all his support, gaining weight, and becoming much more self sufficient. Yesterday, I had this amazing revelation- this is MY baby! It just hit me. I have a child and sooner or later I am going to be totally responsible for this little being.

At tonights visit we got to Kangaroo Care again. This time we practiced breastfeeding for the second time. He did pretty good, but he kept falling asleep. Just trying to suck and stay focused on the task wears him out.

As far as, his care goes, nothing has changed. His feedings moved up to 30mL and Dr. Praszad (Jax's 3rd Neonatologist) said he'll probably have the fortifier added to his breastmilk tomorrow. We need to make sure he is gaining weight and getting enough calcium. That is our major focus so we can bring him home; hopefully in 5 weeks. But other than that he is doing great! He looks wonderful without all the attachments. I know pictures are great and I am so thankful for this technology that allows us to stay connected to all of you; but I REALLY wish you could see our beautiful son. Pictures just don't do him justice.

Update on Jaxon's Progress

As of yesterday, Jaxon is almost off all his support. Initially, he had breathing assistance with a CPAP and then a nasal canula. Now he has been breathing on his own for for a week and a half. He also had help keeping his body temperature regulated with a small water bed heating pad and warm humidity pumped into his incubator. Now both of those are gone and have been for about 2 weeks. His incubator is still heated, but the temperature is being decreased until he is weaned off and able to regulate his temperature by himself. He has also had and IV since he was born, mainly to receive supplemental nutrition and his antibiotics (because of his infection); the IV is still there as a saline lock, but now the supplemental nutrition is gone. If his cultures from yesterday show that the infection is gone and he has no need for antibiotics then the IV will be completely removed. Dr. Paidisetty, his other Neonatologist, took him off the supplemental nutrition because he is doing so well with his feedings they can no longer give it to him. He started out "eating" 1.5mL of breastmilk and now he is at 26mL. Since he's off the nutrition, if he doesn't show that he is gaining weight then he may need a fortifier added to his breastmilk, but we'll wait and see. I imagine he probably will need the fortifier. He also got to "try-out" a bottle yesterday. I wasn't there but his nurse Barb said he did really well sucking, but once he got a little liquid out he didn't know what to do with it. Barb said practice makes perfect, so the NICU nurses will continue to help him figure this out and once he gets a better handle on it Eric and I will be able to bottle feed him. For now we give him a little milk while he sucks on his pacifier. This helps him to put together sucking and milk. He also gets to practice his suck, swallow, and breathe. Well, I think that is it for now. Such simple things but such huge milestones for him. Eric and I are so proud of his progress and we love him so much.

Kangaroo Care

Yesterday I had a doctors appointment, and since I was at the hospital I decided to run up and say good morning to my munchkin. He starts his feeding at 8:30 am and I didn't get up there until 9:30am so I figured I would just check on him and go. Usually, we can only get him out at feeding time because that's when he's awake and we don't want to disturb him while he sleeps. Anyway, his nurse yesterday was Barb and she suggested we go ahead and get him out for Kangaroo Care. Kangaroo Care is a skin on skin contact where the baby lies directly on the mother or fathers bare chest. Studies show that preemies who KC grow faster and are healthier. Jaxon and I've done Kangaroo care a couple of other times (the last post was a Kangaroo Care) and he absolutely loves it. Yesterday he laid on my chest for 2 1/2 hours! He was so relaxed, we just lounged in the chair and took a morning nap together. It was very sweet. He could have tried nursing again, but the little guy was just too tuckered out to even try. I love that the NICU nurses really encourage us to participate in his care and they go above and beyond to help us bond with our baby.

Sunday, January 4, 2009

Trial Breastfeeding

Today I spent almost all day with Jaxon. It was a really good day. Tonight at his 4:30 feeding I got to attempt to breastfeed. He still gets his milk via a feeding tube, but the nurse thought it would be a good idea to let him "tryout" a breast. Now a days, when he gets hungry, he nudges around trying to locate his food, so she thought he'd like this little attempt. It wasn't hard for him either, it was kinda funny because he knew exactly what to do. He even got a little milk out, which should be hard for him because he is so small. Anyway, it was an awesome bonding experience for me! By the end of our time together, he was pooped out! He exerts a lot of energy just trying to eat.

Saturday, January 3, 2009

Jaxon Xavier

Sorry it took me so long to post that last entry. Most of you probably know the story by now, but I wanted to get all the details in writing and the blog seemed liked the best place to post our story.

Jaxon is doing so well. He is 18 days old and so far has only had one set back. Last Saturday, Dec 27th he came down with an infection. It was scary for Mommy because he can't tell anyone where he hurts so the doctor had to do several tests. Jaxon had a urine culture, blood culture, and spinal tap. He is on 3 antibiotics to make sure all the bacteria gets killed. The blood culture was the only one that came back positive and Dr Stich, our Neonatologist, believes he has a staff infection from his umbilical IV line. They removed that IV, so now he has an IV in his tiny hand.

He is feeling like a new boy now. He is so active for his size and age. He kicks his feet and moves his arms all over the place. He's hard to keep in one spot. He also likes to pull his feeding tube out. (He gets fed by a small tube that runs directly into his tummy because he is too small to take a bottle or breast feed) He is also growing. He started out at 1.5mL of milk and has increased to 18mL of milk. When he was born he weighed 2lbs 3.5oz and 13 inches long. Now he is 2lbs 13oz and 14 inches long. Only 3 more oz and he'll be a whole 3lbs. He also likes to tell you when he is hungry or when his diaper is wet. He becomes a really fussy boy! He hates a dirty diaper. When he's hungry he gets mad, but he also roots around trying to find his meal. Yesterday, he even tried to suck on my knuckle!

He is an amazing little guy and we love him sooo much. Eric is really good with him too. Eric gets really involved with his care, he even changes his diaper. For Jaxon's first few days, Eric was the only one of us who could care for him since I was so sick. In a way it was good for him to get thrown into taking care of his son. Eric is discovering that a newborn baby is amazing to watch grow and develop. I don't know what he expected, but I think he was scared that the baby would be a blob of nothingness. But that is so wrong. Even Jaxon being so little is fun to watch as he experiences new things every day. I love watching Eric and Jaxon interact.

Friday, January 2, 2009

Our Baby Story

Here is our story... On Wednesday, Dec 10th, I woke up with "Cankles". I couldn’t believe it I had been having such an uneventful pregnancy until that day. It was literally like someone flipped a switch. I tried drinking tons of water and elevating my feet, but nothing was helping. April, a friend of mine, said swollen ankles could be a sign that something serious was wrong, so as a precautionary measure I called my doctor’s office the very next day. The nurse I spoke with told me I needed to come in immediately, so I was scheduled to see a nurse practioner Friday afternoon. I had just been to the office on Tue Dec 9th and my blood pressure was perfectly normal at 122/72, but when I went in on Friday Dec 12th it had spiked to 150/90. The NP was slightly alarmed and since my doctor, Dr. Miller, was out of town she had to consult with the on-call doctor, Dr. Fox.

Dr. Fox had me sent up to Labor and Delivery where they tried to get my bp under control, but nothing helped. So over the weekend I was hospitalized, put on bed rest, IV'd w/ Magnesium drip and given precautionary steroid shots (in case they had to deliver early). The whole weekend was a crazy blur. I felt like I was being taken advantage of and that Dr. Fox was being overly precautious. Even though Dr. Fox knew exactly what he was doing it was hard to believe that I was that ill. I felt fine, except for my swollen ankles and now everything that was being done to me was making me feel worse than horrible. I couldn’t see how any of this was good for me and Jaxon.

All weekend I prayed that I would make it to Monday morning when Dr Miller would be back. And let me tell you, it was like seeing an Angel when she came into my room that morning. However, she didn’t have any better news, but I was so relieved to see her. She told me I had early Pre-Eclampsia. It's a high blood pressure condition that has deadly effects for both mom and baby and the early you get it the worse the effects.

That morning she sent Eric and I to see a Perinatologist to have a 3D ultrasound to determine Jaxon's growth and umbilical blood flow. The perinatologist reviewed the ultrasound and shockingly recommended delivery. She said he wasn't getting the right blood flow and if we didn't deliver he would probably die in 3-4 days. Talk about a nightmare. After that everything moved so quickly. Eric and I were faced with making very serious decisions, but we knew we really had no options. I had the choice of trying a natural birth w/ a 95% chance of ending w/ an emergency C-section and putting severe stress on Jaxon or just opting for a C-section with little problems. Of course, I chose the C-section. It wasn't what I had wanted but obviously none of this was. I went in that night around 6:30pm for the C-section and was given an epidural. They tried to do a spinal block 7 times but were unsuccessful and those attempts were the most horrible thing I have ever gone through. I had an excessive amount of fluid on my spine due to lying flat all weekend and having fluids pumped through my body. Almost every time they tried the spinal it felt like my right leg was being electrocuted. Finally the epidural worked and Jaxon was delivered at 7:10pm on Dec 15.

I wish that the bittersweet nightmare ended there, but unfortunately it only got worse. When I woke up on the next morning they drew blood to check my blood counts and I ended up going from 12 to 7 (not sure what the numbers mean, but the drop was significant). Because of this drop I had to have a 2 unit blood transfusion and my blood count continued to be monitored. I lost count as to how many times I was pricked w/ a needle over my stay, but I think I had at least 5 IV lines. On Wednesday morning my blood count had dropped again from 10, after the blood, back to 7. So I was sent down for a CT scan to view my abdomen and check for internal bleeding. The scan experience was also horrible and the dye they shot through my veins made me feel like I was receiving acid through my body. Well, what do you know? I have a softball size blood clot in my stomach that has to be immediately removed. But before they can remove it I have to have 2 more units of blood! I was told that the side effects of the pre-eclampsia and magnesium drip had significantly slowed my blood clotting abilities, so when I received the C-section I continued to bleed; a normal person would have stopped after being stitched up. That night, Wednesday evening, I went in for my second surgery and thankfully I was put out w/ medication.

Finally, when I woke up on Thursday the clouds parted and I received good news. My blood count had stayed up and I was being put on antibiotics to fight any infection that might occur. Plus on Thurs, I got to go up and hold my son for the first time. It was the sweetest moment in a week filled with dreadful ones. On Friday, they took all the IV lines out and I was allowed a shower. Can't even begin to tell you how wonderful that was. It was a little awkward since I hadn't been on my feet in a week, but it was wonderful all the same. Then on Saturday, I was released and got to come home.

Now I'm sure you are wondering about Jaxon. He was born 12 weeks early at a gestational age of 28 weeks. He is really really small. He only weighs 2lbs 3.5oz and is 13.25 inches long. The whole week I was in the hospital he did better than I did! He keeps making huge steps forward and so far no steps back. He was initially put on a CPAP to help him breathe, given a jaundice lamp, and had warm humidity pumped into his incubator to keep him warm. But as of today all those things have been removed. We are so proud of his progress and thank God every minute of every day. Although, this experience was totally unexpected and was nightmarish in many ways, we have so much to be thankful for. God was with us every step of the way. It is totally amazing to look back now and see how he was and continues to work in our life. If it hadn't been for "cankles" and technology who knows where we would be today? God provided us with all the things necessary to determine Jaxon's distress and for that we praise His name. All glory be to God!!!