To Our Primaries At IMC

Dear Amy, Brittany, Cherise, Laura, Natalie, and Whitney:

It was more emotional to leave IMC than we would have thought because of all of you.

We will miss you so very much. We could not have come this far without your love and support for our little girl. Madelynn is where she is today because of you guys. You have made this journey bearable for us.

You made us feel apart of your lives as much as you were apart of ours. The hours visiting with you and sharing stories of your families got us through our darkest moments.

You were a shoulder to cry on, a counselor, a confidant, and most importantly you women are members of our family.

Words can never adequately describe the love, and gratitude we feel for you. We are eternally thankful you chose to have this career.

You will forever have a special place in our hearts.

~Crystal, Jeremy and Maddie

Week Fifteen In Pictures

Week Fifteen: December 28-January 3

Monday: We got a call from our primary nurse, Whitney, to let us know the nurse practitioner will be calling Primary today to find out when they can transfer Maddie. She is not protecting her airway as well as they previously thought during the swallow study. They need an ENT specialist to evaluate her and decide what course of action needs to be taken on her vocal cord.
While she is at the hospital they will do her term MRI. This will give everyone a better picture as to what the spots are they are seeing on the scans. At this time they do not know if they are decay spots or if they are spots from the machine.
Madelynn is at 4 pounds 13 ounces, and is just shy of 17 inches.

Tuesday: We have reached day 100 in the NICU.
Yesterday our primary, Whitney, let us know the ENT specialist will come to Maddie on Wednesday. We are gratefully to be able to keep her at IMC. We will have to wait for the evaluation results to know whether she will have to be transferred or not.
She is still at 4 pounds 13 ounces.

Wednesday: Madelynn is 4 pounds 14 ounces. The biggest thing happening today is the swallow evaluation. We don't know when they are coming in. We will be sure to post something when we know. I The evaluation showed Maddie to have a paralyzed left vocal fold. The right vocal fold is partially paralyzed. They think surgery to place a feeding tube into her stomach may be necessary until she can eat properly, and not have to work so hard.

Thursday: Madelynn is 4 pounds 15 ounces. During rounds this morning they decided to transfer back to Primary and have her evaluated there. The specialists there will determine what course of action to take. She will probably be transferred around two this afternoon.
Madelynn has made it to Primary. She will stay there until she comes home. We would rather her be at IMC, but it's not feasible at this time. She will be evaluated on Monday, and most likely have a G-Tube put in to her stomach to help with her feedings.

Friday: Maddie meant her aunt Amanda today! She came all the way out from California to visit the Hursts for three weeks. Thanks Amanda!




Saturday: While we were told yesterday Maddie would probably be receiving the Gastronomy tube on Monday, and we would just have to wait out the recovery process (two to four weeks) we were told today that wouldn't be so. The surgeon will not be able to consider doing the procedure until Maddie has reached six and a half pounds. Madelynn is five pounds two ounces today. It takes her about one month to gain a pound. Conservatively speaking we have another six weeks to wait while she gains weight, and then another two to four for recovery. There is an end in sight, it will just take us a little longer to get there than expected.
We started putting wall decorations up, and assembling the rest of her furniture and toys yesterday. We will post the pictures when we have everything completed.

Madelynn's First Santa and Me Picture

Maddie looks like she had gotten into some spiked Christmas punch.

Merry Christmas from the Hursts!!

Today was our first Christmas as a family.

Our tree is made up of Disney ornaments given to me throughout my 26 years. Jeremy has received two and Madelynn has her first one: Ariel from the Little Mermaid. These are all courtesy of my Grandma Bowden. I don't know how she kept it straight all these years, but I have never received a duplicate. From Cinderella to Pinocchio, they all adorn our tree. I think the green, red and white bulbs and lights accent the tree beautifully. Thank you Grandma for keeping traditions alive. (Oh, and thank the tooth fairy for us for the tooth paste supply!)

Speaking of traditions...

Thank you Myker for keeping the PJ tradition alive!!

We spent some of the morning with her until she kind of fell asleep. Then we left to have a wonderful breakfast with the Hursts. Next it was off to Grandpa Mike's for more gift exchange, and laughs (Love those Broadheads!) Our final family visit (It's so awesome to both come from split families :o) ) was with the Joneses, and my brother's family. Matthew was dressed as Santa. He is such a cute little boy.

The Bowden cousins on their first Christmas.

When all is said and done, we are a very blessed family. Madelynn is our little thirty-five percenter. In her first three months of life she has taught us patience, given us hope, and restored our faith in miracles.

We wish you all the happiness, and blessings to accompany you in your lives as we enter a new year of trials, successes, and joy.

Week Fourteen in Pictures

Week Fourteen: December 21- 27

Monday: Madelynn is three months old. She weighs in at 4 pounds 4 ounces, and she is still 16 inches long. She is on the lowest setting of oxygen she can be on. The speech specialists are working with her to get her on the bottle, and she seems to do well. She drank 5 mL without getting tired.

Tuesday: Jeremy was there for Maddie's feeding time, and she did very well. She took 16 mL before getting tired. She makes very deliberate moves with she is eating: Suck. Breathe. Swallow. She can't quiet do it all at once, but she has time to get the hang of it. She will be in the unit for another month at least. We've already been here for three months, what's one more?

Wednesday: Maddie is four pounds seven ounces. She is so close to being quadruple her weight! She drank 20 mL with her dad today. The optometrist said her eyes are looking good, though they are not quiet developed. Until they are they will not be putting her on 100 % oxygen. She still isn't sure about the bouncer's vibrations, but she likes sitting up and looking around at her little world.

Thursday: She was able to visit with her Grandparents Jones.

Friday: Christmas: Madelynn's original due date. She is now four and a half pounds. Still a little small for the preemie Christmas onsie( Thanks NPs!), but it was too cute to pass putting it on her.
Jeremy has been really diligent about her feedings. He gets off work at four and was able to feed her every day at five. She is really bonding with her father. She knows when he is around, and follows his voice. She has really stolen his heart, and we wouldn't have it any other way.

Week Thirteen in Pictures

Week Thirteen: December 14- December 20

Tuesday: Today's the big day. Madelynn gets her swallow test at one this afternoon. This will determine whether or not she needs to go to Primary's to be evaluated by an ENT specialist. We are crossing our fingers she does well, and will not have to go. She still is not making any noise. When she cries all you hear is the air being pushed out. She was making some noise prior to coding on the third, but now there is nothing. We are hoping her vocal cord is just inflamed, rather than paralyzed, although they can perform surgery in the hopes of remedying the problem.

Update: Maddie passed her swallow test. For the rest of the day she will be on her feeding tube, then starting tomorrow she will be bottle fed twice a day. They are not sure the cause of the muteness, and will not address it or get worried about it until she is an outpatient.

Thursday: Grandpa Rick and Grandma Myker came out to see her.

Friday: Madelynn is now one week from term! She is a happy, little 39 weeker!

Saturday: Jeremy and I got to give her a bath. It was our first time, but she had had her first bathing experience with one of our primaries, Cherise, last week. She did really well. Kind of unsure, but not scared. We did swaddled bath time. This helps her feel more secure. She did wiggle out though and was trying to roll on her side. I about had a heart attack. She is a strong little girl and needs to be held on to all times.









She got to visit with her Grandpa Bowden today. She tried out her bouncer a little more, and still doesn't seem to like the vibrations. She is now 4 pounds 3 1/2 ounces. They will do her length tomorrow.

We aren't getting out hopes up too high, but the NP did state Maddie probably will only have one month left in the unit.

Week 12 In Pictures

Week Twelve: December 7-13

I apologize for not keeping up with the blog. It's been a very emotional weekend.

Tuesday: Maddie is recovering well from being resuscitated over the weekend. She is on antibiotics for 7 days to prevent pneumonia. She got food into her lungs when she aspirated. She did have two IVs in her head, but they have now been moved to her arms. We can still hold her everyday for hours, but the nurses have to hand her to us because of the extra antibiotic tubes. She lost weight during the weekend from all the stress she has been under. She is three pounds six ounces, and measures 16 inches long.
The nurses are encouraging us to bring in things that will stimulate her brain. Even though she is still pre-term they want her to be doing some activities a normal three month old would be doing. They suggested a swing, mobile, and bouncer, along with music and stories on CD. Her paternal grandma Myker has bought her a swing for Christmas, and her father and I are getting the mobile and bouncer.
Next Tuesday they will do a swallow test with her. If she cannot perform well they will transfer her to Primary's to have an ENT doctor look at her. They may need to perform surgery if she has a paralyzed vocal cord.

Wednesday: Madelynn met her great-grandparents Bowden. She got to see her Grandpa Bowden.

Saturday: Madelynn is now 38 weeks and one day gestationally. Madelynn is doing very well on her oxygen. She is on low flow, and getting 1/2 liters. She is up to 3 pounds 12 ounces. The eye doctor says her eyes are developing very well, but are still immature. He will follow up with another exam at forty weeks. We got her a bouncer and will try her out on it tonight. It is so cute. Her little home is now a white crib. Jeremy and Amy snatched it as soon as it was clean. We love our primaries so much! We could not have made it through all of this without them.

Maddie's Cares and Cries *Warning: Beeping Can Get Obnoxious*

Week Eleven In Pictures

Week Eleven: November 30 - December 6

Monday: Madelynn is ten weeks old today! She has tripled in weight since being born. She is now 3 pounds 6 ounces, and 15 3/4 inches long.
She is responding really well to being weened on her high flow oxygen. She will be off her Nitricoxide on the 3rd. Then it's on to low flow oxygen!
She is tolerating being held every day really well. Jeremy held her today. She definitely knows who her parents are. She likes to look around at the world before napping on Mommy or Daddy.
While it is usually a parents' nightmare, we can't wait to hear our baby's cry. Her vocal cords are starting to get less horse, and we can hear faint sounds of her wail. We are hoping the crying will be in full swing by the time we get her home, so that we can hear her when we are sleeping.

Tuesday: Madelynn is doing really well. She is down on her high flow pressure. She weighs 3 pounds 7 ounces. She is 9 ounces away from four pounds.
The nurses put her in the onsies we bought from Babies-R-Us. She has already soiled two.
Our little one is coming along!

Wednesday: Madelynn continues to tolerate holdings very well. She was held by her father for two hours today. She gained 60 grams, she is a whopping 3 pounds 9 ounces.

Thursday: Maddie is going in an open crib today! She has been taken off of her nitricoxide. Her high flow has been reduced to 1 1/2 L. They are hoping to have her on low flow by the end of the week. She is tolerating her clothes very well. The nurse said today she looks like she is in heaven.

Friday: After a positive day, Madelynn asperated milk. It caused her to code, and she had to be recussitated. When the medical team arrived into her room, she was purple. They said it took five minutes to get her to breath on her own. During that time compressions, and breaths were being done. They do not think there will be any long term affects from tonight's episode.
They think she may have a paralyzed vocal cord. This can only be diagnosed at Primary's. They will call Primary's tomorrow and arrange for a trip back. She is back on high-flow oxygen, but remains in an open isolette.

Look At Maddie Grow!

Matthew Cuteness

It's been a while since I have post anything about Matthew so these are a little old.

For Halloween he went as an elephant. He was the cutest little thing.
Matthew is six months and one week old. My sister-in-law has started introducing him to solids food. He has had peas, carrots, butternut squash,and sweet potatoes. At first he didn't know quiet what to think about it all, but he then was reaching for the spoon.

Video of Maddie

Madelynn is pretty strong for a little nugget. She has amazed the medical staff in the NICU with her ability to "roll" (We don't really think there is any cognitive thought process going on, but she moves from one side to her back), and her ability to lift and move her head. We finally caught her lifting and moving her head around when I was holding her today.

Week Ten Pictures

Week Ten: November 23rd - 29th

Monday: Maddie is 2 months and 2 days old! Has it really been ten weeks? We probably have four - eight more weeks to go. She is doing really good. She is officially 2 pounds 13 ounces. Up 1 pound 11 ounces from ten weeks ago. She is 15 inches long. Our reality of what a baby should look like is really distorted because every time we go into the NICU we think she is getting chunky.
She is doing well on her feedings, and extra calories.

Tuesday: Madelynn had a great day today. She got rid of her CPAP, and is now on a high-flow nasal cannula. She is one step away from getting the bottle.
She is maintaining her temperature really well. We just need her to come up one more degree and she can come out of her isolette, and into a crib and onsies.
She is up to 2 pounds 15 ounces.
Maddie is such an amazing girl. We are so lucky to have her, and to get inspiration and hope from her every day.

Wednesday: Another great day. Madelynn seems to be sailing. We are cautiously optimistic about her progress. She is still 2 pounds 15 ounces. She needs to gain 500 more grams before they will start her wearing onsies and putting her in an open crib.
She is tolerating her high flow nasal cannula really well.
She had her eye exam yesterday and things are still looking really good. We have one more eye test in two weeks before they will say she is officially in the clear.

Thursday: Madelynn made it to 3 pounds 2 ounces! She is two pounds heavier than when she was born. It is so amazing to us the difference 10 weeks has made. She just looks like a mini baby now instead of a little Caucasian Starvin' Marvin.

Friday: She is getting weened slowly off of her high flow rate. In the next couple of days they think she may be able to start wearing clothes and getting her into that open crib. They don't feel she will need those extra grams to tolerate it. We are looking everywhere for preemie onsies. We have plenty of preemie pjs, but only three onsies. I found a site that I may be able to get them here before they take her out. Once she is out we will be able to hold her like a normal baby, and not have to go through the whole ordeal that we do right now.

Saturday: We found really cute onsies at Babies-R-Us today. We talked to the nurse practitioner, and he said she can start wearing them tomorrow. She is down to 3 L on her high flow oxygen. 2 more L then she will be placed on low-flow, and the bottle will be introduced. This will start happening in the next couple of weeks. It's a really exciting time because we can see the light at the end of the tunnel.
She is 3 pounds 3 ounces. Kangaroo cares are getting easier because of her weight, and there are not a lot of wires anymore. Her feeding tube is now in her nose so she won't pull it out of her throat. She seems to have left the tube alone since they made the change.

Sunday: Our little potato bug weighed in at 3 pounds 5 ounces today. One of our primarys put a little pink outfit on her, but then the nurse practitioner had her take it off. It might be a couple more days before we can put her in clothes again. We are hoping by the end of next week to have her on the bottle. This is really what will determine her ability to come home so keep your fingers crossed.
She is tolerating holdings really well. She moves a lot, and twists her head around until she can see who is holding her. She is the sweetest little girl when she is happy. We are starting to see a little bit of a colored iris. For the longest time her eyes had a black iris. Now you can see the blue creeping in.

Week Nine Pictures

Week Nine: November 16-22

Monday: Maddie is eight weeks old today. She has grown 1/4 of an inch. She is up to 14 1/4 inches. Her weight is at 2 pounds 12 ounces. She is almost back to full feeds, which is helping her weight can. Her nitricoxide is going down by five. She should be completely off of it December 3rd.

Tuesday: Maddie is back to full feeds. She is getting 19 mL a feeding with 24 extra calories.
*I got to hold her yesterday. She did well for a half hour before she started to destat, but the good new is she recovered really quickly. She then had episodes eleven times during the night. The RN thinks it is because they have discontinued her theofline.
*Her FIO2 level is sitting at 25% because of the steroids, but they don't think that low setting is worth the apnea spells.
*She gained 20 grams, but it did not move her up to the next ounce.

Wednesday: They found Maddie had a collapsed lung yesterday. They changed some medication around, and hopefully it will remedy the situation.
*She stayed the same weight.
*She had a pretty good night. They didn't tell us of any apnea spells.

Thursday: Maddie lost the 20 grams she gained on Tuesday.
*She had one apnea spell during the night.
*Her lung is looking a lot better. The medications are working, and things are going well.
*They did a head ultrasound to check the suspicious spots I mentioned last week. We will know the results tomorrow.

Friday: The results of the head ultrasound are in. There is a small, suspicious spot on her brain, and they will do a follow-up MRI at term. They said it is small enough that is should not cause any problems with C.P. or M.R.
*Her weight stayed the same. They have increased her calories to 27.
*She is down on her Nitriceoxide. She is at 5 now. She will be completely off on the third.
*Jeremy and I have had colds the last couple of days and have not been able to see her. Hopefully come Sunday we will be fine and will be able to hold her.

Saturday: No changes.

Sunday: No changes.

Videos From Kangaroo Care

Getting Situated

Close Up with Maddie

Mommy "singing" to Maddie 'For Baby' by John Denver. My dad used to sing it to me when I was a little girl.

Week Eight Pictures

Week Eight: November 9-15

Monday: Madelynn is seven weeks old today. (Gestationally she is 33 weeks 3 days.)
*Today has brought more apnea spells. She had five during the night and three more
today. They are looking more seriously at putting an oxygen tube in again. For now she remains on the CPAP. There is a bright side: Her lungs are slowly starting to improve. They have her on a seven-day course of antibiotics coupled with the 30-day treatment of nitriceoxide. The main thing to remember about her breathing problems is her neurological immaturity. This problem should go away the older she gets.
*She is up to 2 pounds 6 ounces (1090 grams) and is still the same length.
*They are putting a PIC line in again to help administer her medications.
* When we were visiting Maddie when she stopped breathing. Her heart rate dropped as well. It was the most helpless feeling in the world to watch your baby get bagged and not be able to do anything. She did recover after about 90 seconds.

Lately everything seems like it's going down hill, but that means it's only up hill from here. She will improve, and get better.

Tuesday: Maddie's last apnea spell was at 5 AM this morning. She has been improving slowly, but surely. She is back on her caffeine alternative stimulant. They took her off for two courses because it raised her heart rate so much, but it seemed to cause the apnea. They felt the high heart rate was the lesser of the two evils.
*She has some bleeding in her stomach from all the suction, but they aren't too worried about it.
* She has three more days of antibiotics.
*She is still getting her nutrients through an IV in her hand. She probably won't start getting feedings for another couple of days.
*She is done 40 grams to 1050, but her nurse, Amy (who we love!), said they changed her isolette, and not to worry about it too much.

Wednesday: Our little potato bug is doing so much better. She is staying around 35% oxygen. She has not had any apnea spells, and her stomach looks a ton better. *Madelynn's eye exam went well. No changes from the last exam. The optomistrist from Primary's will be back in two weeks.

Thursday: Maddie is doing better. She is down on her rate with the oxygen. They are lowering her nitricoxide levels. Every five days they move her intake down by five. She had a couple of spells for Amy last night, and for Whitney this afternoon, but nothing too serious.
*We found out today she has some small decay spots on her brain. We were told to hope for the best, but be realistic. These spots may lead to some level of mental retardation, but it is something we won't know until she is much older.
*Maddie weighs in at 1080 grams tonight.

Friday: The reason the NICU is such a roller coaster is because the members of the team don't seem to communticate with each other and like to tell parents things that aren't particularly true. The neuorolist isn't convinced the small areas seen on Maddie's head are decay spots. He is not really worried about it. They will do an MRI in six weeks when Maddie is term to determine what it is they could be seeing.
*Madelynn is 34 weeks gestationally today.
*Maddie is up to 2 pounds 10 ounces. She is six ounces from 3 pounds!
*She is getting formula again. They started her out on 3 mL, but if she handles it well they will not go as slow as they did when she was first getting milk. A full feeding is 17 mL.
*She is done with her antibotic round.
*She had another blood transfusion because her hermaticrit level was low.
*They are weening her off of the ventilator. They are doing this slowly this time as opposed to before when they took her off of it all at once.
*She is recovering well from her infections and other issues.

Saturday: She was taken off of her rate, and is handling everything well.

Sunday: We got to hold Maddie after two weeks of her being sick.
*She gained a few grams, but not enough to get her to the next ounce.
*She is still doing well on her breathing (knock on wood).

Favorite Pictures

We post photos of Maddie on the weekly slide for nearly everyday, but once in a while, as in this case, a photo just melts our hearts and needs it's own post.

I put this one up because she has nothing on her face for a brief moment.

Landon Scott

Meet our little nephew Landon! He is the first child for Jeremy's brother Gerald, and sister-in-law Lisa, who have graciously allowed me to post photos of him. He was born August 18th. It was love at first sight with this little nugget, and how could it not be? Just look at him.

Landon with his Daddy Gerald...probably should have moved the bottle out of the photo. I need photo shop. :o)

Landon having fun with Uncle Jeremy. I apologize for the video quality.

Meeting the Paternal Aunts and Uncles

We got a wonderful surprise this week. Jeremy's brother and his family came down to Utah for a week. The whole Hurst clan, minus Amanda and Brett (whom we missed!), got to meet Madelynn.

Aunt Lisa

Aunt Ricky

Uncle Gerald (Who says Maddie already has him wrapped around her finger.)

Uncle Preston