Week Two September 28 - October 4

*We decided to publish the weekly update blog, and we will post daily updates to it. It will keep the blog more condensed than having one blog per day.*

Monday: I went into the NICU at 730 this morning. Jeremy went to work, but found it a nice surprise when no one else was at Steelco. It is Yom Kippur, and he had the day off. Jeremy joined me at the hospital. Cheryl was the AM nurse. She said because of the events of Sunday Maddie needed to rest. She was under sedation for most of the day. Jeremy and I returned to the NICU later in the evening. We were met at the scrubbing station by Maddie's PM nurse, Kami. She said Maddie had a blood clot in her feeding tube leading into the bellybutton. They had to do a procedure to remove the tube, and attempt to replace it. They were not sure if they would be succeed, but everything worked in our favor once again, and the procedure was successful. We did not stay long, because Maddie needed her sleep, and she gets agitated when there is too much noise. She is still breathing 21% oxygen, which is what we breath. The medical staff can no longer hear her murmur, which we are hoping is closed. We find out the results tomorrow.

Tuesday: Madelynn heard her first fairy tales today.
Maddie had her echo in the morning. The scan showed the murmur to have closed, though not completely. The medical personnel over her decided not to perform another round of medication, and let her body close the rest of the murmur.
She needed another transfusion. This time the line is in her hand. She likes to tuck her hand under her head, but her wrist is not strong enough to support the line. She settles for placing it by her head.
They are hoping to get the umbilical tube removed tomorrow.

Wednesday: Huge step today! Madelynn had her umbilical feeding tube removed in the morning. She is getting her nutrition from her pick line, but the nurses introduced milk to her stomach today. I got to give her the first feeding, and Jeremy did the second. She gets .06 mL of milk for every feeding. It is put into a line that runs into her tummy. They are monitoring the size of her stomach to make sure her digestive system can tolerate getting the milk. Jeremy got to change her diaper twice, and he picked her up to help the nurses weigh her. It's the only time he's had the chance to "hold" her since she is in the incubator. He said it was like picking up air, but feeling the air. He was on cloud 9 for the whole night. I am so proud of him, and how well he does with her.
The medical staff still cannot hear a murmur, and they are trying to determine if they want an echo, or if they should declare it clinically closed.

Thursday: Maddie had a head ultrasound done, the tests results are pending. She's lost 100 grams. She now weighs 1 pound 3 ounces. The medical staff are going to use this as her real weight. Whatever she gains from now on will be counted, and no longer be fluid.

Friday: The hospital "lost" the scan again. This happened with the first head ultrasound. She is susceptible to the bleeds because of the medications given to her for her heart. We got the results late in the night. It showed a small bleed, nothing concerning to the medical staff. They said we all probably had that amount of blood on our brains when we were little.
She is struggling to maintain her oxygen level. She goes from 21% to 40%. The medical staff doesn't worry, though, until the level exceeds 50%.
I had visitors today who came to see me and Maddie. Norma, Anna, and Peggy came to see how I was holding up. It warmed my heart to have people around who care about me. Peggy gave us a little onsie coat. It is adorable.
Late in the night we received news that Maddie is sick. She has an infection in the intestines. She was taken off milk, and placed back on antibiotics. They are taking x-rays of her stomach every six hours to make sure there is not extra air in her tummy. This would indicate the infection has spread. The nurse practitioner tells us if this were to happen it is very serious, although they have yet to tell me what "very serious" means.
All her other vitals are good.

Saturday: She was on her stomach today while receiving treatment for her jaundice, the Billy Light.
The intestine is pushing air into her abdomen, but the medical staff cannot find a bacteria. They are taking every precaution to prevent surgery. They are pushing antibiotics in her IVs, and will do so for the duration of five to seven days. If air and bile rupture her intestine then it would prompt the staff to send her to Primary's for surgery.
The good thing is she has gained three ounces. She is up to 1 pound 6 ounce. The medical staff are seeing she is urinating at a good rate and amount, which means the weight gain is all her, and not fluid.

We went shopping, and were in Bath and Body works when we met a woman named Emily whose son who was born at 26 weeks. It was very serendipitous. The baby was nine months, and as big as our nephew Matthew. The baby is very healthy, the one thing he struggles with is Chronic Lung Disease, which is essentially asthma. He has to be on oxygen at night, but is being weened off of it. She was so kind to take fifteen minutes out of her day to tell us there is light at the end of the tunnel. To hang in there, and everything will work out. She gave us a hug, and told us she would add us to her prayers.

Sunday: Maddie's intestines have started to improve. She is now 13 inches long and 1 pound 9 ounces. She met her cousin Brandi, who flew out from Oak Harbor to be with us for three days. It is so nice for me to have someone form home. Sunday, thankfully, was pretty non eventful. In our world, no change can be good change.

Week Two Pictures

Week One September 21 - 27

Monday: We welcomed our beautiful baby girl. Jeremy gets to meet her.

Tuesday: My first time seeing Madelynn. I wasn't prepared for what one pound looked like. The pictures Jeremy showed me didn't give an adequate perspective. It really is love at first sight when one sees their child for the first time. Later in the evening Madelynn meets her Grandpa Bowden.

Wednesday: Madelynn continues to improve. She meets her grandparents Hurst and her Uncle Darren.

Thursday: Madelynn is very puffy. She is retaining all of her fluid because of the sodium levels. She is given sterile water to help remedy the problem. The treatment works, and her little body starts to lost the fluid weight that night. She meets her Aunt Elly.

Friday:She was given a heart echo and head ultrasound. The heart echo showed an open murmur. We were told it was common in preemies. They have two ways of treating the condition. One with Endison, and one with IB Profen. The endison takes one and a half days per course, where the IB Profen takes three days per course. We were asked to participate in a study. The researchers wanted us to use IB Profen. We were told to think it over, and let them know the next day. The head ultrasound was still pending. She meets her grandparents Jones. I was discharged from the hospital.

Saturday: We receive the results of the head ultrasound. No bleeding on her brain. We celebrate. It was the first test to come back negative. We decide on having her treated with the Endison. We wanted the fastest results, because we needed to know sooner rather than later if surgery would be necessary. We spoke with nurse practitioners, and the Neonatologists, and they felt Endison was the best way to go.

Sunday: She was given an echo. The murmur showed to have closed slightly. The doctors decide to follow through with the remaining courses of medication. She had a busy day of transfusions, medications, and labs.

Week One in Pictures

The Amazing NICU

There has to be a special place in the universe for NICU nurses. Not only do they care for our smallest treasures, but they are also counselors and confidants for the parents.
They are very patient people. Willing to answer the same question over and over again. They are there with a shoulder to cry on or a celebratory hug.

Even though we have just begun our journey with these people we are eternally grateful for what they have done for us. These are just a few things they have made for us during Madelynn's stay:

Hospital Certificate of Birth

A scrapbook page of Jeremy's wedding ring resting on Madelynn's hand for size perspective.

Madelynn's foot prints and information

A scrapbook of Madelynn in her bows.

We have a bunch of different nurses. We want to try and get photos of all of them. We are eternally grateful for these women. I hope none of our readers has to go through what we are, but if they do that they are fortunate enough to get the caliber of people on their side that we do.

Madelynn Amber Hurst

Delivery Day

On September 21st I was placed on a continuous heart monitor. Madelynn's fluid had dropped, and her blood flow was more absent than it had been previously.

I was on the monitor for five hours. The doctors decided Madelynn would have a better chance outside the body than in.

At eight they started prepping me for surgery. They gave Jeremy his moon suit to come into the room with me.

At eight thirty we were in the operating room.

At this point I could not feel my legs, and was pretty doped up on medication.
It took nine shots in my back to get to this point.
This was the result of the shots.

Jeremy held my hand and stroked my hair the whole time. They told him to stand up to see Madelynn come out and get handed through the window. She was born at 9:26 PM. She weighed in at 1 pound 2 ounces, and was 11 3/4 inches long.

Jeremy was the only one allowed to see her. He took to pictures for me to see our little girl. I was unable to see our baby until Tuesday evening because of the surgery. I am grateful for the photos to get me through the night.

The Dopplers and Playing God

We were released on the condition we come in every two days for testing. The doctors ran ultrasounds looking for two things: The Amniotic fluid and the blood flow through the umbilical cord.

The amniotic fluid sterile urine. The more oxygen the baby is getting the more fluid there is. When the oxygen level is decreased the baby's body uses the available oxygen in their brain and heart. The kidneys in turn suffer, and do not produce the urine. Once the fluid drops below five delivery is necessary.

The oxygen is given to the baby through the blood flow in the umbilical cord. In our case the umbilical cord was preventing the blood flow from getting to the placenta and the baby. The doppler showed there to be an absence in the blood flow. The baby could remain inside if the blood flow never went backward.

While attending these sessions the doctors asked us to make a difficult decision. If the tests became ominous would we want to deliver the baby and take the risks of severe retardation, but have a live baby. Or do we want to leave her in the uterus to give her a chance of developing more and mature, but have the risk of still birth. We had to wrestle with having a live baby, but not knowing what kind of life she would have. Our fear being having Madelynn be so severely retarded 0r physically disabled we would be unable to care for her, and have to have her live in a hospital like the one in American Fork. Or give her a chance to mature with the possibility of death.

The tests did become ominous on September 18th. We decided to be admitted and have Madelynn monitored. What would happen would happen, and we would handle the obstacles as they came.

Two Hours Turned Our Lives Upside Down

I went in for my six month OB/GYN appointment on September 10th. We had our 25 week ultrasound. The technician told us the baby was growing really well. The anatomy looked great, and we were told she was big for her age. We listened to the heart beat, and had our questions answered by the nurse.

We had a couple of hours to burn before our next appointment for the 3-D ultrasound. We went to Toys-R-Us to get our niece her birthday present, and get some games for my DS. We then went and got some juice smoothies from Cold Stone, and sat in the Women's Center parking lot of IHC-Murray while we waited for our appointment time.

We are apart of a study, and the researchers were giving us a courtesy 3-D ultrasound through Maternal Fetal Medicine. The technician looked concerned. She called in a paraneonatologist. The amniotic fluid was low. The doctor ran further tests, namely a Doppler, which looks at the blood flow into the placenta. The blood flow was absent. The baby was very small, and was classified as Growth Restricted. The doctor explained to us she was admitting us to watch the baby. I would have to have steroid injections to mature the baby's lungs, and it was a possibility the baby would be delivered that weekend.

We saw at least four different doctors over the course of the evening. We were given the "hard numbers" of our situation. 60% of babies born at 25 weeks survived. Of those babies 65% of them suffered from blindness, deafness, and some form of retardation.

I was given the injections over forty-eight hours. The baby was monitored, and after four days at the hospital we were released. I was to be on bed rest until the delivery.

In the end we were left with a big question: How could something this serious have been missed? The Answer: The technician was in a hurry and had failed to look at the fluid level, and the cord because it had been checked eight weeks earlier.

Weigh In

With the outfit being picked out we are now hoping she will fit into it. We bought a newborn set. The weight is 5-8 pounds. We are hoping she will be between those weights.




Jeremy was 7 pounds 13 ounces.










I was 7 pounds 4 ounces.





How much do you think Madelynn will weigh? Will our outfit fit her?

Jeremy Likes Being Prepared

One would think we would have plenty of time to prepare for the day Madelynn is born, but Jeremy doesn't like to waste any time.
My husband has already picked out Madelynn's homecoming outfit:

Since she is a December baby he wanted to make sure she would be warm. So he picked out a coat:

And we need receiving blankets for when she gets here:

These are courtesy of my aunt Amber.