December 31, 2003

Unfortunately, Jacob's eye exam didn't bring good results. Both of his eyes have gotten worse. Dr. Varenhorst's partner, Dr. Dalla, performed the exam. He consulted Dr. Varenhorst who is in Iowa for the week. He will be returning to Wichita late Wed night and will be in first thing Thurs to check Jacob's eyes. He will most likely need surgery on both eyes to help prevent vision loss. Once I talk to Dr. V in person I will be able to share more. 

On a lighter note, Jacob did well with his feelings today. He took all 180 ccs by bottle in the 12-hour period. If he can keep it up, that tube will stay out of his little nose for good! He looks great without tubes and tape on his face.

December 30, 2003

12:30pm - During my visit last night, I was able to speak with Dr. Roan about Jacob. His main concern right now is his eye condition. Duh! I expressed my concern with him about the exam and that I would be very upset if it wasn't going to happened today. He understood my concern but doesn't have control of their schedule. I can totally understand that, I just don't want them waiting too long and letting his eye possibly get worse. When I got to work this morning, I called Dr. Varenhorst's office to find out whether or not they were going to see him today. (Yes, I have become very impatient when it comes to my boy!) The receptionist took my name and number and said she would have someone call me. Well, here it is almost 4 hours later and nobody has called me. Come to find out, Dr. Dorn, the Neonatologist on-call today, called Dr. Varenhorst's office also and found out they won't be in to check him until tomorrow. I'm ok with that; at least they aren't pushing it further. 

Another change is being made with Jacob's feedings. At 11am they decided to pull the ng tube (actually, Jacob took care of that on his own....little bugger) and start on-demand feedings. Over the next 12 hours Jacob can eat as much and as often as he wants as long as he takes in at least 180 ccs (about 6 ounces) and allowing no more than 4 hours between each feeding. So, it's up to the fighter to start showing his stuff. He needs to wake up, cry, squirm, and say, "Feed me!" Ok, so we all know he won't say that, but you get the idea.

4:30pm - Alrighty then...change of plans. They will be checking Jacob's eyes today. Right as I type this in fact. Soon after I spoke with Jacob's nurse earlier, the eye Dr's office called to say they'd make it in and to start dilating the baby's eyes. Great. I didn't find this out until 30 minutes ago. Oh well, no matter when I found out, at least I found out. I will add an update this evening when I get the results. I don't know if the eye doc will call me or if I will wait and hear when I get up there after work. Please say another prayer for the Fighter.

December 29, 2003

8:40am - Oh boy, I just love Monday morning! Ok, not really! Anyway, Jacob's MRI came back normal. The report never printed out so I had to look at his daily progress notes to find out the results. Another hurtle overcome. Now we wait patiently and anxiously for tomorrow’s eye exam. Since the stage his left eye is at, 4a, is partial detachment of the retina, I doubt things look better. I could be wrong though. This may sound terrible, but if in the end he ends up with one good eye (with central vision) things will be ok. He can fully function even if he loses sight in one eye. I hate to think about the possibility, but I have to make light of a difficult situation. 

He didn't gain any weight yesterday, but he didn't lose either. He is bottling well only being tube fed when he's very sleepy. Today Dr. Roan is returning from a long holiday weekend, so I hope to get a better idea of homecoming when I talk with him. I'm sure the results of tomorrow's eye exam will play a roll in that decision too.


2:50pm - I spoke with Jacob's morning nurse a few hours ago. He has bottled well since midnight, only feeding once through the NG tube at 2am. I haven't talked to anyone about his 2pm feeding though. During rounds this morning, Dr. Knight, a pediatric surgeon, was consulted about a possible hernia in Jacob's scrotum. He also looked at his very "outie" belly button. Though no official report was given, the nurse said he didn't seem too concerned. I will learn more when I visit this evening. 

I called Dr. Varenhorst's office today and spoke with someone (A nurse or receptionist, I'm not sure which) regarding Jacob's upcoming exam. I found out that Dr. Varenhorst is out of the office until next week. When I heard that I thought,”Uhm, excuse me?" Before I spoke up, she said one of Dr. Varenhorst's partners would take care of exams while he's out. Yeah, they better!! Or else!!

December 26, 2003

12:00am - We had a very Merry Christmas!! On Tuesday Brett went to Dodge City, Kansas (about 2 1/2 hrs W of Wichita) to visit his parents and came back Wednesday with many wonderful gifts for us and for Jacob! Bill and Reatha were very generous this Christmas!

Yesterday, after taking some gifts to my family, I went to the hospital to spend the evening with Jacob. (Brett stayed home to sleep because he worked the night before). I brought with me his "First Christmas" outfit to put on him for pictures. Well, he could have worn it longer had his Mommy not left him open to the air so long during a diaper change. Oops! The pictures turned out good though, with the help of Nurse Pat. Check them out in the Yahoo album at: http://photos.yahoo.com/dyslpr_1976. 

I bottle fed the Fighter at 5pm and 8pm yesterday and he took the whole thing both times in under 30 minutes! Good boy! I am very proud of him. A few pre-discharge orders were written early yesterday. A second hearing test, an MRI (for the history of seizures) and a car seat check. At this point, his discharge date will depend on how his eye exam goes next week. His bottling is getting better but not good enough to go home yet, so a few extra days won't hurt. He took 6 out of 8 bottles yesterday so he's getting there. And going by his original (estimated) due date, he is two days old today! That means the Fighter was 111 days early! Wow, he has come a long way!

12:40pm - Jacob went for his MRI early this morning. He did very well and we should know the results later today or tomorrow. He bottled well overnight and at 11am this morning. They didn't bottle him at 8am because of the MRI. I am going in today at 2pm to bottle him and probably again this evening. He's really picking up on it. I am very, very proud of him!

December 24, 2003 - Christmas Eve

I checked out Jacob's chart last night and found out the one eye is at stage 4a, which means the retina has already partially detached. He will most likely need more surgery and has a chance of losing his vision in that eye. What to do next will be determined Tuesday when Dr. Varenhorst checks his eyes again. Let us pray things get better.

Pat's idea didn't go over too well. She suggested I come in and bottle a few times in a row to get used to things instead of trying to go to mother/baby this weekend. That way, when he is ready for mother/baby I will be more prepared and some-what used to bottling him. So today, I will go in at 2pm, 5pm and 8pm to bottle him. I get off work at 12pm so it works out.

December 23, 2003

I knew I shouldn't have gotten my hopes up! One of Jacob's eyes has gotten worse (the other has stayed the same). This means he won't be able to come home by the 28th like they thought early this morning. The 28th was the "magic number" as one nurse called it. He has to stay until his eyes are checked again next Tue in case they are worse and need surgery again. If they are the same or better, we should be able to bring him home. That's if everything else is still going well. 

During my visit this afternoon, I spoke with Jacob's evening nurse Pat. She said that maybe they would let us go to Mother/Baby Sunday and Monday to get used to things, and then see what happens Tues with his eye exam. Either he'd go back to the NICU for surgery or he would get to come home. At least we would have gotten the Mother/baby part of out the way to get used to caring for him and bottling him, etc. She told me not to get my hopes up because she doesn't know if they would do something like that. It sounds great to me!! =)

December 22, 2003 -

9:50am - Oh boy, our little Fat Cow is picking up on bottling fast! It will be no time at all before he comes home! He's already had three bottles today. One at 2am another at 5am and the latest at 8am! Each time he took the entire bottle - in 12 minutes at 5am! Wow! In my last entry, I motioned some notes written on Jacob's chart regarding his latest eye exam. The words were "Nasal Regression." I thought that meant a step back, when in fact it means a step forward. When it says regression, it means a regression of the problem, not of his eye condition. The ROP has gotten better in one eye and there is still no change in the other. Of course, I don't remember which is which. He will continue checking him once a week. So, good news all around with our little Fighter!

Tomorrow night I will be taking an infant CPR class. The class is required before they will release Jacob from the hospital. Brett and I signed up to take the class next Tues (the 30th) but since he's so close to coming home we moved it up to this week. Brett will be going to his parents house in Dodge City that night, so I will be taking the class alone to be prepared if he's ready to come home in the next few days. He will go to Mother-Baby for a day or two before that, but we would rather be ready instead of putting homecoming off to take the class. I am so overjoyed and excited! Shoot, I had better get his room finished! Yikes!

7:30pm - Oh Boy, Oh Boy, Oh Boy.......He is SOOO close!!! I talked with Dr. Roan when I was in this afternoon and he thinks Jacob will be ready to come home within the next week!!!!! He will probably come home with oxygen to use during feedings, as well a monitor to use for a few months. He has taken all but one of his bottles so far today. That's 2am, 5am, 8am, 2pm and 5pm. They gave him a break at 11am and at 8pm tonight, they will try if he seems awake enough. It could be just a few more days until he's ready for Mother Baby! I am taking an infant CPR class tomorrow night!! He took a picture with Santa today! It came out so nice! Unfortunately, Santa came and went before I got to the hospital so I didn't get any on my camera...just the Polaroid the hospital took. I will try to get it scanned and online soon!

Brett and I went to Wal-Mart this evening and bought a few more things for Jacob and some last minute Christmas gifts. We bought a dresser for Jacob, bottle cleaner, a big fat pack of wipes, a car window visor and...Uhm...I think that was it. Oh, wait a KU hat! Yay!

December 20, 2003

Our 107-day-old Fighter is picking up on bottling very well. He took almost the entire bottle for me yesterday evening and took the same for the nurse at 2am and for Dad at 8am. They might increase his feedings again if he acts as if he's interested. The nurse I just spoke with said if he seemed awake and alert around one of his feeding times, they would try to bottle him. He only gained 19 grams yesterday but that's better than losing so we aren't going to complain! He had an eye exam on Thursday and some notes were written but I didn't understand the medical lingo so I will wait and speak with a Dr. while I am in this evening. Let's pray everything will be ok with his vision.

December 19, 2003

When I arrived at the hospital last night after work, the nurses were getting ready to move Jacob out of isolation! Yay! That made me forget the fact that his nurse was misinformed and didn't wait for me to get there to bottle him. Jacob wasn't quite ready to be out, but they needed the room for a baby who was much sicker. After the shift change at 7:30pm, I went back in to give him a bubble bath! Nothing like slippery baby bottom! =) He stayed off oxygen all night and bottled well. He may be increased to 4 bottles a day today!! Dr. Roan told me last night that he thinks we are still looking at around New Year's for Mother-Baby/Homecoming. How exciting!

December 18, 2003

He's getting so close! Jacob took almost (all but 7ccs) of the bottle I gave him yesterday at 5pm and he took almost the entire bottle for the nurse at 2am this morning. Since he gained weight, they will do three bottle feedings today and if he gains again tonight, will increase to four tomorrow. He had to be back on oxygen for a short time last night, but has been off and reading high since. He's getting stronger and feeling better and gosh darn it, he wants to come home!! =)

December 17, 2003

I went to the hospital at 5pm yesterday to meet the Speech Therapist helping Jacob with his bottle feedings (Brett was supposed to meet me there but ended up staying home to wait for the heating & air guy to come fix our furnace - which woke me up yesterday sounding like a truck going through the living room), and he took an entire bottle in less then 20 minutes! At that rate he will be home in no time...well, maybe another two weeks or so. He didn't do as well this morning with Brett though. He took a tiny bit then fell sound asleep in dad's lap. That's ok; we will try again tonight when I go in after work. Jacob spent the entire night off oxygen!! And he did very well, reading high and having no episodes of apnea or bradycardia. I am very happy right now and can't believe the progress he's making! God has a plan for him, that's for sure!

December 16, 2003

We may need to start calling Jacob a Super Fat Cow! He's over 6lbs now!! He bottled very well yesterday evening and took an entire bottle for Brett this morning! I think he's starting to feel a lot better. Telling him he needs to bottle to come home probably helped too! He came off oxygen again this morning and stayed off for two hours before they put it back on for bottling. As of right now, I'm not sure if he's back on or not. I will have another update later. Brett and I are meeting with the Speech Therapist today to talk about Jacob's feedings. She will show us some techniques to help progress with his bottling. Homecoming is getting close!!

December 15, 2003

After a restless night, Jacob is having a good morning. Yesterday evening I had been holding Jacob for a while and as I put him back to bed, he began to cry. He was squirming and seemed very restless. That or he knows when Mommy is leaving. =) I thought for a moment maybe he was having trouble in the pooping department, but the nurse said he had a nice diaper for her soon after I left. A few hours later, he was taken off oxygen but only lasted a few minutes before de-sating. So, he's back on but at a minimal setting. And of course, while I was with him last night Dr. Roan came by to see if I had any questions (I didn't). Then he told me that the only thing keeping Jacob in the hospital is his feedings! I leaned into Jacob and told him, "Did you hear that? You just need to get this bottling thing down and you can come home." Then, POW - he took 42 out of 55 ccs from the bottle! Little man wants to come home! As of this update, they are only bottling him twice a day. Once in the morning by Brett; and in the evening with me. When Brett and I don't make it in, a nurse does it. The Haberman nipple is what they are using to feed him. It's longer than a normal nipple and has a flow valve. Jacob has taken to it pretty well. The speech therapist, Nancy recommended it. Oh yes, and I can't forget his weight, a whopping 5lbs 14.5 oz!! Yay!!

December 14, 2003

Oh boy, what a busy weekend! Not too busy for Jacob though, which is a good thing. He's just been sleeping, eating, pooping and growing! Ha, ha His weight has fluctuated by a few grams over the weekend but nothing to be concerned about. He's still a Fat Cow at 5lbs 12oz! He's bottling twice a day and is getting pretty good at it. Hopefully they will increase the feedings to three times a day soon. His oxygen requirements are still minimal and they might try him off within a few days. He may need it during feedings though. Overall, the little Fighter is doing great!! And that makes me very, very happy!

December 14, 2003

Oh boy, what a busy weekend! Not too busy for Jacob though, which is a good thing. He's just been sleeping, eating, pooping and growing! Ha, ha His weight has fluctuated by a few grams over the weekend but nothing to be concerned about. He's still a Fat Cow at 5lbs 12oz! He's bottling twice a day and is getting pretty good at it. Hopefully they will increase the feedings to three times a day soon. His oxygen requirements are still minimal and they might try him off within a few days. He may need it during feedings though. Overall, the little Fighter is doing great!! And that makes me very, very happy!

December 12, 2003

Today's call from Dr. Roan brought some good news and some not-so-good news. The not-so-good news is that Jacob probably won't be ready to come home by Christmas. The good news is that the blood cultures they drew (a week ago) started showing growth, so they were able to determine what type of "cold" he has. It's an upper respiratory virus, which, like all viruses, there is no treatment. Dr. Roan said he is resolving the virus pretty well on his own. Because of the virus he will have to remain in the isolation room indefinitely- maybe even until he comes home. They don't want to take the chance of spreading the virus to others. So we are probably looking at sometime around the 1st of the year to bring him home. The main thing he needs to conquer still is bottle-feeding. This morning a speech therapist met with Brett and tried to feed Jacob with a new type of nipple. It has three different flow gages to allow Jacob to take more in without tiring out so quickly. He took just over half the bottle. They will continue to use the new nipple as he progresses. 

I am a little disappointed that he won't be ready to come home for Christmas. I have to look at the upside of things though. He is doing very well, gaining weight, on minimal oxygen and hasn't had any spells in a while. I've been able to get through the last 99 days; I think I can handle 15 to 20 more! I thank God every single day for giving me the strength to get through this. He's amazing!

December 11, 2003

The spare room is finally becoming Jacob's room. I have finished painting the walls (white) and will finish the inside of the closet this weekend. Last night Brett put together the crib and nursery cart. I have washed some of the bedding and will wash his clothes this weekend. We've checked out dressers at Target and Wal-Mart but so far haven't bought one. We need to though because we have tons of clothes for him! I will have to return some because they are too small! I knew we shouldn't have bought so much preemie stuff! 

The Fighter is doing well this morning. Dr. Roan has returned from a few days off so hopefully I will get the scoop on things such as when he will come out of isolation and how much longer he'll have to be in the NICU. Not that the other Dr's couldn't tell me those things, but Dr. Roan is his Neonatologist so he makes the major decisions. They may be consulting with a speech therapist to help in the bottle-feeding efforts. Last night Jacob took over half a bottle for the nurse but he isn't being consistent enough and may need a little help. He has a large indentation in his pallet from the ventilator tube being in so long, and that may be contributing to the problem.

December 10, 2003

Boy this flu epidemic isn't a joke, Wesley's NICU isn't allowing any visitors other than healthy parents until further notice. With so much going around, those have to be very cautious. It's a good thing my Mom was able to visit on Monday!

Little man is doing well this morning. Just hanging out, still stuffy from his cold but it seems to be getting better. His morning nurse hasn't heard him cough yet so that may be getting better as well. Yesterday he had an eye exam and the Dr saw no change from last week, which is a good thing. Though they don't look better, they don't look any worse either. He will continue to have his eyes checked once a week for the next few weeks. Bottle-feeding is still a struggle for the little bugger. I am hoping the cold he has is what's causing the problem and once it's gone; he will start feeding more consistently. I tried to bottle him yesterday evening and he didn't seem interested at all. Sick or not, sometimes it takes micro-preemie's like Jacob a while to get the hang of bottling.

December 9, 2003

My fat little cow.......5lbs 11oz!!!! They weighed him three times to make sure and sure enough, same every time. I really underestimated his homecoming weight! I didn't anticipate him gaining weight that fast! Other than a stuffy nose and some coughing, he is doing well. He's still on minimal oxygen without any spells since last week. He will be coming out of isolation on Friday! Yay!

December 8, 2003

Ok, when I tried to feed him, he doesn't take anything, but when a nurse does, like this morning, he takes over half the bottle! Am I doing something wrong? Goodness! I am counting down the days until he comes out of the isolation room and hopefully back up to the Special Care Nursery. I would love to visit him again without having to put on a gown, gloves and mask. I can't kiss those puffy cheeks with a mask on!! Ok, I'm better now!

December 7, 2003

After sleeping in late, I went up to the hospital for Jacob's 2pm feeding. He was squirming and coughing and just wasn't very interested in the bottle. He only took about 6ccs...out of 55. After 20 minutes of trying, I put him back to bed and changed his diaper. Whoa, boy that was fun! Jacob is famous in the NICU for having a smelly bum! Hmm, maybe that's why he was so restless...concentrating! Nothing changed when Dr's did their rounds today. His oxygen increased slightly this morning though. I talked to his nurse about his coughing and asked if she would mention something to the Dr on call. From what the nurse told me, the Dr isn't going to become concerned unless he has a large increase in his oxygen requirements. Alrighty then! Boy is he gaining weight now! He's already up to 5lbs 6.5 oz! I think I underestimated his homecoming birth weight!

December 6, 2003

I get to see my boy today! Yay! It's been 4 days and I am going nuts! I am still a little stuffy and cough once or twice, but the cold is gone enough! heheh Jacob is doing well today. I found out last night that he would have to stay in isolation a total of 10 days, which would be until the 11th. Hopefully he will go back to Special Care after that. With the cultures still being negative, the only thing keeping him in the NICU is the need for isolation as a precaution. His oxygen needs are minimal and he hasn't had any spells since early Tuesday morning. I will try to bottle feed him today! That should be fun! Once he's bottling every feeding, it's homecoming time!! I can't wait. Shoot, that means I need to hurry up and get his room finished! I did some touch up painting last night and will finish painting the inside of the closet today. Then I will set up his crib! Oh, this is so much fun!

December 5, 2003

I feel like I haven't seen my boy in weeks when in fact it's only been 4 days. And I'm going to make it 5 because I still have cold symptoms and don't want to risk getting him or anyone else sick. He's doing very well this morning. I asked the nurse about his weigh and according to the chart, he gained over 100 grams yesterday. That's a huge weight gain for one day so his morning nurse told me wait and see what his weight is tomorrow. Normally when there's such a large gain, they weigh the baby more than once to get an average. That wasn't the case for Jacob so we will see what it is tomorrow. I'd say he's at lease at the 5lb mark! All the cultures they have taken so far have come back negative. Yay! So maybe the little guy just got a touch of Mom's cold!

December 3, 2003

Though still in isolation, Jacob is doing well this morning. Talking with his nurse I found out he hasn't had any more spells since yesterday morning and has otherwise been fine. The culture they took yesterday didn't show any growth after 12 hours, which is great but they will continue to check it every 12 hours growth. Other than having his nose suctioned a couple times since yesterday and a few little coughs, Jacob isn't showing any signs of infection. If he is getting a cold or something similar, it most likely came from me as I am home today with a bad cold. He’s fighter though and I know he will kick this too! Oh yes, and our Fat Cow is now just under 4lbs 14oz! Getting close the 5-pound mark!

The shower my co-workers and friends threw me yesterday was a lot of fun. I received many wonderful gifts and had fun playing the "guess the baby food" game. I'll have pictures from the shower up soon!

December 2, 2003

9:00am - Due to the continued apnea/bradycardia spells, Jacob is going back down to the NICU this morning. Dr. Roan will then order a CBC (Complete Blood Count) to check for any early signs of infection. Dr. Roan explained to me that Jacob isn't showing any other signs of not feeling well, but he wants to check things out to be safe. He told me bottle-feeding could be contributing to the a/b problem because he is still learning how to suck-breath-swallow. As soon as I know more, I will spread the word.

3:30pm - Jacob is having a good afternoon. He is back in the NICU in an isolation room. He will remain there until they can determine whether he has an infection. I let the nurse know that I woke this morning with a sore throat and that if Jacob is sick, I probably gave it to him. What a nice Mommy!! The blood count they ordered came back normal and they have ordered testing on his throat secretions but that will take a day or two to show results. Needless to say Mommy isn't going to visit him for a day or two or until this cold thing goes away. 

This afternoon my dear friends at work are throwing me a baby shower. My Mom, sisters and Brett will be coming up to join us. I'll share all the details and probably many photos tomorrow!

December 1, 2003

Jacob the Fighter has Graduated!! Yesterday afternoon he moved from the NICU to the Special Care Nursery! He will now be bottle fed twice a day! I am so proud of my boy! He gained another ounce putting him at 4lbs 9oz! He had a few minor apnea spells over night but none since 7am. I think the little guy will be home for Christmas....I hope so anyway!!