Wednesday, January 28, 2009

Maybe it's starting the Prevacid for reflux. Maybe it's stopping the Levsin drops. Maybe it's all our prayers. Maybe it's starting the Erythromycin for motility. Maybe it's stopping the inhaled steroid. Maybe it's all our prayers. Maybe it's being off of the oxygen during the day. Maybe it's being out of Mom and Dad's room. Maybe it's all our prayers. Whatever is is, maybe it will last.

We have been holding our breath for several days now and waiting for the other shoe to drop. I am afraid to even say it out loud or mention it for fear of jinxing things. But things have been going really well. However, my thinking is that if you all know that things are going well then you can continue to pray that things will keep going well. Please, please, please. 

First, since Friday night Morgan Kate has been sleeping at night and not during the day. This means Mommy and Daddy are sleeping too. It's amazing how much better you feel when your baby sleeps at night. We have come up with a sort of "bedtime routine" and it seems to be working. Thank goodness. Last Friday morning I was a mess. I was so, so, so very tired. When Travis and I woke up (after about two hours of sleep) I just cried and cried. When my dad took Morgan Kate and I to the pediatrician later in the morning I even cried to her. That night Morgan Kate slept. Maybe it was my crying or maybe it's because Kaky was here and she worked some of her magic.

Second, Morgan Kate has also been taking her bottle every three hours, which is much more manageable than every two hours. She even cries when we take it from her to burp her. There have been a few times when she doesn't want the entire thing and I don't push the issue. Monday morning she weighed in at nine pounds and six ounces. Wow! Now I realize that our "feeding success" could be temporary. Many preemies face issues with eating. They have weeks where everything goes smoothly and then there are weeks where they want nothing to do with food. I just pray that the success continues and that Morgan Kate will continue to grow and thrive. 

Now that we are on some sort of schedule, Travis and I are sticking to it. At 8pm each night we bathe her, lather her up with lotion, reattach all of her monitors, put her cannula back on, dress her and get her ready for bed. We feed her at 9pm and then she is off to sleepy land. If the phone rings during this time we don't answer. If we are doing something else and 8:00 approaches we immediately stop. If we happen to be on the phone and the call reaches that time, we end it. We are doing whatever we have to do to keep this going. 

No appointments this week. After we went to the pediatrician Monday morning and told her that things were going well, she told us to take the week "off". All we are supposed to do is work on our routine. And that sounds great to me!

Monday, January 26, 2009

While at home the first few weeks, Morgan Kate lived in our room. Literally. She slept there, she ate there, she got a bath there, she played there, she got her diaper changed there. She did everything in our bedroom. We thought it was a great idea to have everything in one place. Not only did we have our bed, our night stands, our dresser and our stuff, but we had MK's pack-n-play, MK's glider, MK's clothes and blankets, and MK's changing table. Now I consider our bedroom to be a rather decent size, but it was getting to be ridiculous. My bedroom was beginning to feel like a dungeon. 

This past weekend we moved Morgan Kate to her bedroom. Oh, how nice it has been for all of us. She has her own room, we have our own room. She has her own space, we have our own space. She is sleeping better, we are sleeping better. You get the picture? Anyway, since she is now in her room I thought I would share some pictures. (Unfortunately, the pictures don't really do it justice!)

I must say that I absolutely love her room. It is just what I dreamed(dreamt?) of when I first found out that Baby Callahan was going to be girl. It is everything I envisioned, but nothing I actually did. Well, I guess I pointed in different directions and told people where to put the furniture. Most of the work was done while I was hospitalized and the remainder was done while Morgan Kate was in the NICU. One part of the room I can take credit for is the closet. There were many, many nights after spending the day at the NICU that I just couldn't sleep. Way too much going on in my mind. So I used that extra time to completely organize her closet. 

This is the view from the door.

This is Morgan Kate's little dresser with all her little clothes.

Morgan Kate's crib and oxygen tank. Notice the precious mobile hanging above. Thanks to Kaky! I have been wanting a mobile that's interactive, bright and musical. This one has it all. Also, notice the HUGE box of diapers from Uncle Owens. Thanks, Uncle O!

MK's changing table.

Another view of the crib and mobile.

Her closet all nice and organized, except for maybe the very top.

Saturday, January 24, 2009

A few firsts at five months.

That's right. Our baby girl is five months old. Crazy, isn't it? I was talking to my mom earlier and I was telling her that I can't believe that five months ago this precious baby came into the world weighing only one pound and twelve ounces. I was so incredibly scared that day and I still am at times, but she continues to amaze me. 

Speaking of amazing. Check out some of Miss Morgan Kate's firsts. I have been teary eyed all day long.

Our visit with pulmonologist went very well yesterday. We have discontinued the inhaled steroid and...NO OXYGEN DURING THE DAY. Yahoo. Amazing, amazing, amazing. There were times when I actually thought she might wear her nasal cannula to college or on her first date. God is so amazing and created these organs called lungs that continue to grow and heal for years. Isn't it wonderful? For the first time in five months Morgan Kate has no tubes, no wires, or anything else on that precious little face. She has done exceptionally well without the O2 and she only has to wear it at night. 

After many, many weeks in Mommy and Daddy's room, Morgan Kate spent her first night in her own room and in her big girl bed (the crib). It was incredible and all night long I kept asking myself, "Why in this world did we ever think she needed to sleep in our room?" For goodness sake, she spent the first 107 days of her life in little room all to herself. Last night Kaky stayed with us and she slept in the guest room which is right beside Morgan Kate. Our walls are paper thin and you can hear anything. I'm serious, from that room you can even hear her breathing. Tonight we will stay in the guest room and will continue to stay there until she is off of all her monitors. We have monitors in our bedroom that allow us to hear what is going on, but I am so afraid that in our lack of sleep we might not wake up. So sleeping right next door to her will be perfect. She did awesome last night and we pray that tonight will be the same.

Today I was able to "catch" my girl smiling. She has been smiling for weeks, but I am never quick enough to get it on camera. Tonight it happened. Enjoy!

And for the grand finale...
After five long months GDaddy got to hold his baby girl's baby girl for the very first time. Talk about melting your heart. Again, simply amazing! As of yesterday the only people that have held MK are Travis, my mom and myself. We aren't kidding when we say that we aren't having any visitors or allowing others to hold her. We do NOT want her getting sick! GDaddy has had clean bill of health and we made sure his hands were clean, clean, clean. 

Thursday, January 22, 2009

Busy, busy day this way. Busy, busy day on very little sleep. However, we are napping when we can and sliding in sleep at any possible time of the day.

Morgan Kate's blood work from yesterday came back and the results were not what the doctor wanted. I'm not really sure what they were testing for or the "correct terms". I have not been as "medically savvy" since leaving the NICU. My brain just can't hold much more. I do know they were checking her electrolytes and one other thing - something nutritional. One of her electrolytes was elevated and the nutritional number was much lower than they wanted meaning she is not getting the calories she needs. So, we went back for more blood work. Yesterday they pricked her heel and today they drew blood from her arm which is supposed to be more accurate. For any of you that know me, I HATE having blood drawn. Really. It makes me nauseous and I get really pale and usually I like having my mom right there so I can squeeze the life out of her hand. While I was not having blood drawn today, I was holding my precious little daughter who was screaming bloody murder and trying with everything she has to wiggle out of my grip. After thoroughly inspecting both arms to find anything that resembled a vein we were on our way. The blood work came back this afternoon and her electrolytes were fine. The other test, the "nutritional" one, will be done again in a few days. 

Our game plan after meeting with Dr. G this morning is to continue the two hour feeds for the next few days. Wow. My eyes hurt just typing that. She has been tolerating those feeds very well. We have also changed her reflux meds. She was taking Omeprazole (sister to Prevacid) and today they switched her to Prevacid. We are trying everything we can. She also going to take a med to assist with the motility of her stomach - basically moving "things" through. It's possible that her stomach is not emptying quick enough. If things don't improve in the next few days then they will do a PH probe. This involves running a tube down her nose, through her esophagus and into her stomach. It will stay there for 24 hours and measure the amount of reflux and how high/low the reflux is. Hopefully, the meds will do the trick. I am just glad we have a game plan and know what to expect next. 

This afternoon we met with a speech-pathologist (I told you it was a busy day) and she gave us some great tips regarding her oral aversion, as well as the reflux. She watched me feed Morgan Kate and she attempted to feed her as well. She thinks that MK does have an oral aversion, but that more of her issues are from the reflux. 

Well, I am now on duty and another bottle is waiting...

Wednesday, January 21, 2009

One day I am sure this feeding thing will get easier. One day. Hopefully very, very soon. However, today was not the day.

The past 24 hours have been interesting. Last night we decided to work on our new "bedtime routine". Ha, ha, ha. What were we thinking? We got Morgan Kate read
y for bed and gave her a bottle at 8pm. Our plan was to feed her and put her to bed. We knew she would probably fuss a little, but we were prepared to "let her cry" and do whatever we had to do to make sure she went to sleep. Well, Miss 
Morgan Kate had other plans. Here is a brief timeline of last night:

Trav fed Morgan Kate. After taking an ounce Trav tried burping MK. She burped and then started with this clicking sound in her throat. Next minute - projectile vomit. Clean things up, change clothes, finish the bottle. MK was able to get an ounce in.

After the bottle MK gets sleepy so we put her down. Until midnight (her next feeding) she cries and cries and cries. We let her cry, then we come in, pat her back, give her the pacifier, even try rocking her. She gets sleepy, we put her down again, she sleeps for about ten minutes and then the crying starts again.

I give MK her bottle. She takes the entire thing, burping throughout. After finishing the bottle she starts with the same clicking sound in her throat. Minutes later - more projectile vomit. Clean her up, clean myself up, try feeding her a little more because she is clearly hungry, put her to bed.

From midnight until 2:30 we continue the crying, sleeping for ten minutes routine. Finally, at 2:30 she gives it up. 

Trav feeds MK. Able to get 50cc's in - no vomit.

I feed MK. She will only take an ounce. I don't push the issue because at least she hasn't thrown up.

I feed MK. Get one ounce down, clicking noise starts, more projectile vomit. Clean her up, clean myself up, let her rest, give her a little more and call pediatrician.

From noon until 5 we give MK Pedialyte to keep her hydrated. We also bundle up and go have blood work done. Dr. G calls around 5 and says we have two options:
Option 1
Travis and I can feed her an ounce every two hours for the rest of the night and we will come up with a plan first thing tomorrow morning.
Option 2
We can admit MK to the hospital.

Travis and I opted for Option 1, so we are currently feeding her one ounce every two hours. We want to avoid the hospital at all costs. To stay alert and be able to function we are taking shifts. I tried sleeping from 8pm - midnight and he is asleep now. We have an appointment first thing in the morning to decide what to do next. Please pray that we get this figured out. I don't know what else to do. It breaks my heart to see her this way and know there is nothing I can do to make it any better. She is on maximum amount of reflux meds and she's on her fourth formula. 

On a much, much lighter note, we did have snow here today. Such a rarity here. So much so that most all schools closed and many business shut down shop as well. It was so pretty, but we didn't dare go out. Too many cords and wires anyway. I was able to snap a few photos of the nice white stuff and then took a photo of MK before we left for the blood work. She was too cute all bundled up!

Monday, January 19, 2009

There is a new button on the sidebar to the right. Please click on it to visit a family that is in need of some mighty prayers. A wonderful family that I have never met, but have been inspired by their story and love for the Lord. Please say a prayer for their new baby girl, Harper. 

Last night didn't bring as much sleep as the night before, but we are hanging in there. Luckily we didn't have anywhere to go today so we all slept in. So, so nice. It was 4pm before I even took a shower. 

Tonight we are trying a "bedtime routine". We will see how this all works out. My plan is to stick to this for the next few days, hopefully longer, to see if it helps create some sort of routine/schedule.

We have two appointments this week. Wednesday we will venture out to the pediatrician's office and Friday we are going back to the pulmonologist, Dr.B. Last time we were there Dr. B put Morgan Kate on an inhaled steroid. After about three days we had to stop the steroid because Morgan Kate was refusing to eat. Once we stopped things started improving feeding wise. Not sure what Dr. B will suggest this time. For the past two weeks her oxygen has been on 1/64th of a liter and she has done great. I am hoping and praying that Dr. B suggests taking her off during the day and just having it on at night. 

I will try and post some new pics tomorrow. Maybe some will even include snow. You know, the whole inch and a half we are supposed to get. 

Sunday, January 18, 2009

Shhh. Baby sleeping.

We had a really good night last night. Morgan Kate got some much needed rest and so did Mommy and Daddy. Travis and I are slowly learning what her cries mean and how to help her. It has taken a little bit of detective work, as well as trial and error, but we are learning. We may have this whole thing down pat by the time she leaves for college. Ha! Right now she is napping. Shhh.

Morgan Kate is also eating some better. She still likes to put up a fight with her Mommy, but she is a "bottle pro" when she's working for her Daddy. This morning I literally called Travis into the bedroom, handed over Morgan Kate, and asked him to show me what he does to get her to do so well. Thankfully he was able to give me some pointers. Hee, hee. 

I realize that I may have seemed somewhat negative lately. When you have looked at the same four walls for days, are going on two hours of sleep, have a baby that won't stop crying, and monitors that are constantly alarming it gets to be quite overwhelming. Throw in some hospital bills and other medical expenses, especially in this economy and things really start to get to you. These last few weeks have been so hard. Really. Nothing I could have ever prepared for. It didn't matter what advice I was given or books that I read - NOTHING helped prepare me. At times I am sure it seems that all I do is complain or I even seem to exaggerate about how things are going. But I promise it's all been the truth. It has been a quite a battle getting her to eat and sleep, but like I said, I think we are figuring it out. I think. And hopefully things are starting to get better. Not to mention that warmer days are even closer and we will FINALLY be able to get out a little.

Saturday, January 17, 2009

My goodness. Mommy dearest here is so very tired. The past few days have been exhausting. Morgan Kate has decided that sleeping at night is not what she wants to do. She's not really into that type of thing. We have been up for the past two nights and last night not only was she awake, but screaming. This new formula seems to be working for the moment, but gives her extreme gas and gas pains. She already takes Mylicon, but it doesn't seem to be helping.
I say the formula is working, but then I am not really sure. The first three days on the formula were great and now things are back to the "usual". Lots of spit-up, occassional projectile vomit, not sleeping, extreme fussiness. Oh, and did I mention that this formula is $50 a can? Wow! We can order it online for a cheaper price, but you have to order a case of it. I'll invest in a case when I know this stuff is working.

We met with the GI doctor Thursday and it proved to be uneventful. I like uneventful especially when it comes to Morgan Kate, but I sure wish we had more answers. Basically our only orders/instructions were to make sure we are giving her the reflux medicine twenty to thirty minutes before she eats and to continue with the new formula. It may take about a week before the new formula starts "working".
Right now Kaky is here. Such an answered prayer. She is rocking Morgan Kate while Travis and I get a few things done. So, so very nice. I keep trying to convince her to move in.
In spite of the gas pain and late nights, Morgan Kate continues to flash those heart-melting smiles. She will pause during her crying sessions, look up at me and just smile. It is such an overwhelming feeling and definitely helps me get through those rough spots.
Keep smiling baby girl. Keep smiling.

Wednesday, January 14, 2009

Four hours of uninterrupted sleep because my husband took the the "early part" of night shift.

A swaddled baby. Now that's new.

No OG tube.

Excellent appointment this morning with Dr. G.

Two ounces GAINED.

A nap this afternoon that actually helped Mommy take an hour nap as well. 

Pretty awesome day if you ask me. And I am praying for more of this kind.

Morgan Kate actually slept last night. What a feeling. She truly slept the entire night, except for the times we had to feed her. She would eat, make a few noises and then she was off to sleepy town once again. She even let me swaddle her.

Little background info about swaddling. Some people claim that babies don't have memories and that they won't remember the pain they go through as children. Ha! I say those people are wrong. One of the reasons eating is so hard for Morgan Kate is because she remembers the pain her reflux caused her. She remembers how uncomfortable it is to have the OG tube in. She also remembers that while in the NICU she had to be swaddled while wearing the CPAP. She would give the CPAP a fit. Arms flailing, legs moving, hands grabbing. It was rough. The only way to tame her was to swaddle her. Since coming home she screams if I try to swaddle her. She gets so mad and so red and I just end up tossing the idea. However, last night and the night before she has let me swaddle her and it has made a huge difference. I think she still remembers, but she's just giving Mommy a second chance. 

We have not had to use the OG since Sunday when we had our little episode. Since that time we have been on all bottles again. We have also come to the conclusion that maybe her irritatibility was caused from the inhaled steroid. We have since discontinued it and things have gotten a lot better.

Our appointment this morning went very well. She weighed in at eight pounds and twelve ounces. I was so excited. A weight gain even with some pretty rough "non-eating" days. Dr. G says she looks and sounds great and we are to return next Wednesday. far, so good. Bottle feeding is going. It's not terrific, but it's going. And nap time? Nice. She has already had a really good nap. I was in the midst of doing laundry and writing thank you notes and then I just decided to ditch both and take a nap as well. An hour later I feel nice and refreshed and I may even start dinner.

Wow. I love these good days. 

Tuesday, January 13, 2009

Sleeping and eating.

For those of you who know me well you know that I love to eat and even more, I love to sleep. I don't really have any favorite foods. I mean of course I love anything Asian, I could eat jars full of pickles, and spaghetti makes me smile, but I really just like anything that pertains to food. And sleeping. Wow! I could sleep for days. There is nothing better than curling up in bed or on the couch and sleeping for hours. 

I was hoping that since my daughter looks nothing like me she would at least take on some of my interests/hobbies/etc. I guess I was hoping she too would like to sleep and eat. However, as each day passes I realize that she doesn't like to eat and she could really care less about sleep. I was always under the impression that babies loved sleeping and eating, but I am quickly learning that this baby isn't like most babies. 

On most days Morgan Kate naps occasionally, but only for about thirty minutes at a time. And at night? Huh! She doesn't sleep at all. I am convinced that she is nocturnal. Now I have tried numerous "strategies" and "tricks" to get her to sleep at night, but so far it hasn't helped. And my favorite is the "just let her cry until she falls asleep". Well you see, when your child is on oxygen and hooked up to various monitors you can't just let them cry. She starts crying, she gets worked up, breathing becomes more difficult, alarms start going off. Not pretty. 

Food doesn't interest her at all. I vividly remember being about ten years old and my youngest brother, Kyle, was just a baby. He would wake up in the morning crying and the only thing he wanted was a bottle. I would sit in this green rocking chair by the window with lullabies playing in the background and he would tear a bottle up. If I took the bottle away just to burp him he became angry. Morgan Kate. She gets angry if I try to put the bottle in her mouth. She loves for me to burp her because she then gets a break from the bottle. She doesn't wake up crying for a bottle, she doesn't suck it down really quickly. Each time we feed her it's like we are force feeding her. 

However, today has been quite different. I would even use the term angelic. Morgan Kate has done much better with her bottles. Of course she still doesn't cry for them, but she is at least taking them and I am only having to fight half of the time. And sleeping? She has taken two really good naps today. According to Babywise she should eat, be awake and then sleep. (Too bad Babywise doesn't have a book about infants with monitors, or infants who don't care about "clock feeding" or "demand feeding, or infants with oxygen.) Today she has seemed to follow that pattern and it has been so very nice. She has taken her bottles, been awake and active and then napped for about an hour and half each time. I have been able to wash dishes, do the laundry, make some much needed phone calls and even shut my eyes for a minute or two. 

Today has been awesome! I pray that we have more of these days. Days where things run smoothly and feel normal. Days where everyone is happy and semi-rested. Angelic it is! 

We are heading to the pediatrician first thing tomorrow morning for our weekly visit and we are seeing the GI doctor Thursday. Hopefully, the GI doctor can give us some good info.  

Monday, January 12, 2009

After a week of no OG tube we have had to use it once again. 

Saturday night around midnight Morgan Kate took a bottle (70ccs) and then threw the entire thing back up. Projectile vomit. All over her, all over Travis, all over the boppy, the rocking chair, all over everything. The rest of the night she would only take about half of her bottle and even then she would fight like the devil. Late Sunday afternoon we decided that we were going to have to put the OG tube down. We didn't want to do it, but Morgan Kate needed to eat. I was at Babies R Us picking up a few things we needed and Travis was at home attempting to feed her. When he put the tube down she threw up everywhere and turned all shades of red and purple. Needless to say, she was NOT happy. She was coughing and gagging. Not pretty. So Travis pulled the tube out  and we just decided to skip that feed. At the next feeding we put the tube back down (awful) and we fed her pedialyte for the rest of the night. She was able to keep the pedialyte down, but fought it every minute. We were up the ENTIRE night. 

We called Dr. G this morning. We have continued the pedialyte through today and Dr. G is making us an appointment with a gastro doc this week. In the meantime we are going to try a new formula, Neocate. 

Today Morgan Kate has been a little more settled. She is still fighting her feeds and is not sleeping well at all. I am going to attempt her first bottle in just a few minutes. Wish me luck!

Friday, January 9, 2009

Reduce the amount of oxygen. Start inhaled steroid. Gain weight. These were some of our orders after today's visit with Dr. B.

Today we had our first appointment with Dr. B, the pulmonologist. My dad came over early this morning to help me with Morgan Kate and all of her "luggage". We arrived early to fill out paperwork and all of that good stuff. I left Daddy and Morgan Kate in the car while I went to sign in. We have been told time and time again not to expose Morgan Kate to other people, especially children. Therefore, I thought it would be best to keep her in the car and bring her in once they were ready. This has been the "protocol" for all of her other appointments. Well, apparently the "nice" lady I spoke with wasn't familiar with our "protocol" and didn't really care either. Here is a snippet of our conversation:

Me: Good morning. I am here for my daughter's appointment. She is a preemie and has chronic lung disease and we aren't supposed to expose her to others. So, would it be okay for us to sit in the car and you call us when you are ready?

"Nice " Lady: Ma'am, everyone here is a preemie and here for the same reason. So can you just bring her in and wait like everyone else.

Whoah! Did she really just say that? At this moment I am in a state of shock. I am blown away by how rude and insensitive this lady has just been. I walk out of the office on the verge of tears and trembling like a leaf because I am now really angry. I'm angry because this is my daughter. My daughter that was born way too early. My daughter that has spent the first four months of her life fighting and trying to stay healthy. My daughter that I have been able to keep "illness free" for the first month we have been home. My daughter that I will do anything for even if it makes other people uncomfortable. I go to the car, get Daddy and Morgan Kate and head back to the office. I walk inside, approach the window and then my "Momma bear claws" come out. Here is the last snippet:

Me: (As I am handing over my paperwork) Ma'am I realize that there are a lot of premature babies here. However, I need you to realize that my daughter just came home a few weeks ago and we just spent four months in the hospital and I don't really intend on going back. So could you please get us a in a room as soon as possible. Thank you.

Five minutes later we had a room. And I felt empowered. 

Other than that small moment in time our appointment went very well. I loved Dr. B. He was great and he was so knowledgeable. He thought that Morgan Kate looked good and was pleased with the amount of oxygen she was on. He told us that we could turn her down some. We are now on the very last setting we have on the oxygen tank. 1/64th of a liter is as low as you can go and we are there. We will try this for a few weeks, then work on taking her off of the oxygen during the day and then if all works out we will take her off completely. He has also prescribed an inhaled steroid for her, much like a breathing treatment. It is to help with any inflammation in the lungs. The only thing he was a little concerned with was her weight. Often times babies with lung issues or those that require oxygen grow a little slower because they are working so hard. We are going to return in two weeks for a weight check and to see how the steroid is working. Morgan Kate also got her synagis injection and is due for her next one in early February. 

We have given her two treatments tonight and turned down her oxygen. So far, so good. All of her numbers look great and she is sleepy peacefully. While she is sleeping I think I will too...

Thursday, January 8, 2009

Still no OG. However, no weight gain. Matter of fact we have lost weight - two ounces to be exact. Right now we are at eight pounds and ten ounces. Some of you may be thinking, "Two ounces, is Heather really concerned about two ounces?" Well, yes. Heather is concerned about two ounces. In the NICU world and in "preemie land" ounces mean a lot. We live off of ounces. Ounces are huge. 

The plan right now is to change the water to formula ratio we are currently using. This will create more calories and hopefully create some weight gain. Currently, Morgan Kate is only taking two ounces at each feeding and we struggle to get that in. We are going to start making up her bottles with a little extra food to see if she will take more. Maybe there will be that one feeding where she is feeling extra froggy and wanting a little more. Hopefully all of this will do the trick. If things don't start progressing then we may have to go back to using the OG.

We are also going to really start working on some sort of schedule. We have her on a feeding schedule, but that's about it. She continues to confuse her days and nights. Last night she was wide awake until around 4am and she was not happy at all. Needless to say, Mommy was extremely tired today. I am anxious to work on a schedule, but still not sure how you keep a baby awake during the day when all they want to do is sleep. Any suggestions?  

We are heading to the pulmonologist first thing in the morning. We have a consultation and Morgan Kate will get her synagis injection. I'll keep you all posted. 

Wednesday, January 7, 2009

Still no OG. Oh happy, happy day. I was a little afraid, okay very afraid, that I might have to use it last night. When I tried feeding her at 1am she was sound asleep and wouldn't wake up for anything. Now, I was always taught that you don't wake a sleeping baby, but I know she's a little different and that she has to eat in order to keep growing. After much stimulation she finally gave in and took the bottle and I didn't have to use the OG. Heavenly, simply heavenly. 

We were supposed to go today and receive the results of the apnea monitor, but all appointments were canceled this morning around 8:30. Apparently something went haywire with the computers and the information could not be retrieved. They are going to reschedule as soon as possible. My daddy came over this morning to help me get her to the appointment. I am still trying to learn how to get baby, oxygen, pulse ox, apnea monitor, purse, and diaper bag all at the same time. It's not really an appointment for, but I couldn't leave her at home. So my wonderful daddy offered to sit with her in the car while I went in. I was sad that he had to drive all the way over and we didn't end up having the appointment. However, I was thrilled because he got to visit with her for a little while and he also got to watch her take a bottle. 

Take a glance at the picture below and tell me what you notice (other than the poor quality of the picture, my good camera battery was dead and I had to use my old camera).

So, did you notice? Just in case you didn't I will spill the beans. Morgan Kate is not wearing her cannula. That's right. When I first saw her without it it was like looking at someone who you always see with glasses on and then they take them off. When Travis got home he didn't even notice. That's just how accustomed we have grown to the cannula - we don't even see it. Now, this is nothing permanent. I was changing the "dots" on her face this afternoon and I decided to just see how she would do without the cannula. We were in the room, very near to the oxygen tank if needed and for a little over an hour she did great. She did not have any sat drops. After about an hour I decided or reminded myself that I am not in the medical profession and that I should probably put the cannula back on my baby and let the doctors handle that. However, I was very pleasantly surprised to see her do so well and I will be sharing this info with the pulmonolgist on Friday. She is amazing! 

These last two pictures are more examples of growth. Notice the dots in picture one and notice the dots in picture two. Wow! Same exact dots, just much bigger baby. 

Tuesday, January 6, 2009

Oh my goodness. We still have not had to use the OG to feed Morgan Kate. Ahhh! I can hardly believe it. Please, please, please let this be the end of our OG days.

We have also found a new nipple for Morgan Kate's bottles. It kind of happened by chance, but it happened. Around midnight last night I was trying to promote "positive feelings" around MK's mouth. So I was using this pacifier that we got from the NICU. It's not just any paci, it's an awesome "wee soothie" and we only have two of them. (Mental note: We cannot lose these, because this size is not sold in stores.) Anyway, this particular paci has a hole in the center because we were experimenting with formula one day at the doctor's office and Dr. G poke a hole in it. I was allowing MK to suck on the paci and I was squirting formula through the hole with a syringe. I noticed that she was really into it and not fighting it at all. The hole in the paci is a lot bigger than the hole in the old nipple. Lightbulb moment! I went in the kitchen and started digging through some other nipples that we had - Dr. Brown's level 1 nipple to be exact. I popped it on a bottle and she finished the entire thing in fifteen minutes. She didn't fight it, she didn't grunt, and we both actually got to cuddle some. Watch out bottle world, here comes Miss Morgan Kate! We have fed her with that nipple all day today and she has done fabulous. What a good awesome day! I am praying hard that this is not just a "good for today" kind of fix. I hope it's much, much more permanent. 

On another happy note - Morgan Kate has been smiling like crazy for two days now. It's beautiful! She has smiled before. She's actually been smiling for quite sometime. But just in the past two days she's been smiling so much and actually seems to be smiling at us, or at least that's what we are hoping for. 

Tomorrow begins our first day of appointments for the week. Tomorrow morning we our having the apnea monitor read. Remember, this particular device monitors her breathing and heart rate. If her heart rate drops or gets too high we can't actually see the number it just makes a red light. (Well actually we can see how low or high it gets because we also have the pulse ox, but most people with apnea monitors can't see. Hope that makes sense.) So tomorrow we will read the information and decide how much longer she has to "wear" that particular monitor. The alarms have gone off, but I think they were all false alarms because each time the alarm has gone off she looks perfectly fine and the pulse ox reads fine too. So we will see. We have another appointment with Dr. G on Thursday and then an appointment with the pulmonologist on Friday. 

I have been meaning to post about this for the longest time, but keep forgetting. Not only did Morgan Kate get TONS of Christmas presents, but she also had two of her own Christmas trees. How neat is that? Thanks to the Ingrams and the Burleson's for the beautiful trees. Oh, and did I mention that these trees were "handmade"? They were not bought like this. So creative. These trees are very special to us and definitely added some much needed Christmas cheer. We can't wait for Morgan Kate to really see them next year. 

From the Ingrams

From the Burlesons

Sunday, January 4, 2009

I'm afraid of saying it too loud or even typing it for fear of jinxing myself,  but I think that the OG feeds are dwindling. I think. Things are subject to change at any given time. However, Miss Morgan Kate has not been OG fed since early Saturday morning. Yep. That's right. She took all bottles Saturday, through Saturday night, all day yesterday and through last night. Keeping all my fingers and tossed crossed, well along with all my prayers, that this good fortune continues. Life without OG would be so very nice. 

As I was driving to the grocery store late yesterday evening I was thinking about all the things I have learned since August 24.
I have learned...
-I have learned that God is more amazing that I ever knew and that he does hear my every prayer and that I need to spend more of my day with him. I have always believed in God and seen his works. I have prayed and asked for his guidance. However, a few months before Morgan Kate was born I was having a hard time with prayer. I wasn't sure what my prayers were supposed to be about or how they should sound. I wasn't even sure if my prayers were important. I have learned that my prayers are important, that I prefer talking to God "conversational style" and that my prayers are quite specific. I have learned a great, great deal about prayer and about faith. 

-I have learned about a kind of love that I have never experienced before. The love a parent has for a child. I look at this precious baby girl and I am captivated by her eyes and her smile and the way she smells. I love watching her sleep or seeing her sit in her daddy's lap. I could sit all day and watch this wondrous site. 

-I have learned a great deal about the medical profession. Now, I am by no means qualified to insert an IV, diagnosis a medical condition or even take someone's temperature for that matter, but I have learned a lot. And if there is something I don't know then I know where to go for answers. I have also learned that the nurses, doctors, respiratory therapists and other staff employed by Palmetto Health Baptist NICU are the BEST around and that God put us at that very place for a reason. 

-I have learned that at 26 weeks gestation most babies don't have eyelashes, nipples or cartilage in their ears. Their ears are extremely floppy and fold over very easily. So easily that at times, when folded just right, it almost appears to some people as if they have no ears at all. (Not mentioning any names....Owens.)

-Since August 24 and through the blogging scene I have learned about a whole new world. A whole new world of parents that have unwavering faith and children that will make your heart melt.

-I have learned that I can shower in just five minutes. And that lipgloss and mascara are all I really have time for and they happen to work just fine. 

-I have learned to change a diaper with one hand and hold a "paci" with another, while opening the diaper genie with my big toe.

-I have learned that I can get by on just a few hours of sleep and that I will survive. It might make me slightly cranky, but I can survive. 

-I have also learned that there are all these great books about raising babies, but who has time to read a book when you have a newborn or any children for that matter. I prefer to rely on advice and help from my fab mommy or from other mommies/parents out there. 

-I have learned that the "crockpot" is the best invention.

-I have also learned that actually posting to this blog takes a lot longer these days. I started this post yesterday afternoon and I am just getting a chance to finish and post. Whewh!

-And I have learned that I have the most incredible family and friends that have supported us, encouraged us, called us, sent us cards, brought us meals, and prayed for us each and every day. You have all made each day so much easier!

As I think of other things I have learned I will post. Believe me, I have learned a lot.

Saturday, January 3, 2009

Silent Saturday
(No words, just pictures.)

Friday, January 2, 2009

After some kicking, screaming and flailing of the arms the results are in and it seems that our baby girl might just have a tiny tummy. No problems with the esphagous, no problems with the throat, no stomach or intestinal problems, matter of fact Morgan Kate's anatomy looks great. What a huge relief and an answered prayer! Several months ago someone told me that, "All premature babies have something wrong with their stomachs, so you can bet your bottom dollar that something will be wrong with hers." Well, I am happy to say that that person was wrong!

We arrived at the hospital a little before nine this morning. Travis went in to finish registering and left the two of us in the car. Once he returned we waited for "the call". Since Morgan Kate is not supposed to be exposed to others we sat in the truck and had them call us when they were ready. Right at 9:30 we got the call.

We began by explaining the things that had been occurring at home and then the upper GI began. We thought she would have to drink barium, but they actually have a clear liquid that infants can drink instead of the barium. Thank goodness! They attempted giving her a bottle and didn't have much luck. They asked us to try and give her the bottle, but unfortunately we didn't have much luck either. Not sure if it was the nasty stuff she was asked to drink or the fact that they had her lying flat on her back. Now who drinks anything while laying flat on their back? Come on. We don't feed her that way and she's not used to it. After several attempts with the bottle we had to put the OG tube in. Of course since she had taken "some" of the bottle she threw it all up. We then secured the tube and they finished injecting the liquid into her stomach. They then took x-rays every 15 minutes to see how the liquid was processed and how it traveled through her body.

Around 11:15ish the radiologist came out and spoke with us. There were no signs of reflux - today. She said that it is quite possible that she has reflux, but that at this particular feed it didn't occur. She said that everything else looked great - everything was where it was supposed to be and there were no obstructions. She said that everything was moving quite quickly and she would probably have a messy diaper any minute. And boy did she!

There were only two things that they noticed:
1. When they tried giving her the bottle she would not take it. She would not suck or swallow. Of course they have never seen her take a bottle before, so they seemed to think that we need to see a speech therapist and get some work done (stimulation around the mouth, work with the nipple, etc.). Often times premature babies develop an oral aversion because of being on the vent or being OG fed for so long. Morgan Kate was never on the vent, but has been OG fed since birth. The tube has been put in, taken out, taped down, tape removed and so she possibly associates things around her mouth with pain. It can sometimes take preemies years to outgrow this. They can work with a speech therapist (because this oral aversion can later cause speech and language delays) and we should also try different things ourselves. We should touch her face gently, kiss her face gently, use the pacifier, have her suck on the bottle nipple with no bottle attached and so forth. All things to promote positive things happening around her mouth. I don't think this is the complete cause of the her feeding problems, but I do think it has something to do with it.

2. The other thing they noticed was that they only gave her 30ccs or so of the liquid and it completely filled her stomach. So, they seem to think that maybe we are feeding her too much or too often. Therefore, the squirms, cries, arching of the back and so forth are because she is trying to tell us she's not hungry.

Today we have been working on touching her cheeks very gently, rubbing around her mouth, having her suck a nipple, having her suck our finger and our pediatrician also reduced her feeds from 66ccs to 58ccs. At 12 this afternoon she took a bottle beautifully, at 4 she would only take about 40ccs and she threw about 15 or so of it up, at 8 she took a good bottle and just now she finished another one. However, as I type this she is screaming and Travis is doing everything he can to console her.

She is continuing to fight her feeds and it is definitely a struggle. At times it really gets the best of me. I just want feeding time to be calm and soothing and a bonding time for us. It ends up being such a battle and just an overall awful time. We just want to find out what works for her so that things can get better.

We are thrilled and so very thankful that nothing is wrong "mechanically". How awesome is that? Thank you for all your prayers!

Thursday, January 1, 2009

Morgan Kate's upper GI is scheduled for tomorrow morning at 9:30. The procedure will take place Richland's Children Hospital. After pre-registering and talking to numerous people I think everything is scheduled and ready to go. Everyone I talked to was extremely nice and helpful, but I did want to share a piece of my conversation with who I will call the "GI lady".

Me: So exactly what does this procedure entail? (Keep in mind I myself have had an upper GI before, but I wasn't sure what it would look like for an infant, especially an infant that doesn't always drink from a bottle)

GI lady: You all should arrive around 9am. Do not let your daughter eat anything three hours before the procedure. Once you arrive your daughter will have to drink barium and we will watch it move through the throat, esophagus and so forth....

Me: I'm sorry. Drink?

GI lady: Yes, we will put the barium in her bottle and she will drink it.

Me: (Laughing in my head) Ummmm, well you see, she's not taking bottles exclusively so that may be a problem.

GI lady: Well, she has to drink some because we have to watch her swallow.  

Me: Okay, well I'm not sure how that will work out. Should I also bring her "tube stuff"?

GI lady: Yes, please bring everything.

At this point I am thinking, "Great, first she's going to have to drink this awful stuff, which I know she probably will not do. And then we have to bring all the "tube paraphernalia" too. Great. This is going to be  quite interesting."

Me: Well, exactly how long will this take? 

GI lady: As long as it takes for her to drink the barium.

Me: (Laughing hysterically) Okay, well hopefully you have the morning blocked off because it takes her a very long time.

Anyway, I am praying that things go smoothly and that Morgan Kate will at least drink some of the barium. Travis and I are both really anxious to see what is going on in that little digestive system of hers. We started the Levsin drops Tuesday afternoon and for the first 12 hours afterward things seemed to be heading in the right direction. However, shortly after that things reverted back to usual. She is crying during her feeds and just seems so uncomfortable. There were several days where she was sleeping at night and awake during the day, but that has changed too. She is now staying up till around 3am and then sleeping a lot during the day. It has worked out so far, because we haven't had anywhere to go, so we can sleep too. However, we have several appointments in the next few days and we won't be able to "sleep in". 

Not really sure how you get a infant to stay awake during the day. Still working on that one....